Skip to content

Toggle service links

You are here

  1. Home
  2. Type of care
  3. Nature of care

Nature of care

The following resources examine what caring involves – what care is provided.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

Background: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. Methods: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. Results: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. Conclusions: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

Access source material through DOI

Covid-19 and the Impact on Family Carers

This paper will examine key rapid surveys and research studies which have been conducted by various researchers and organisations both in a specifically Irish context and internationally.

Original source (some source materials require subscription or permission to access)

Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

Access source material through DOI

Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members

Purpose: Little has been determined regarding the association between patients’ and families’ illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers. Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results. Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients’ illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC. Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers. 

Access source material through DOI

Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis

Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis. Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND. Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews. Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one. Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.

Access source material through DOI

The Influence of Caregiver Preparedness on Caregiver Contributions to Self-care in Heart Failure and the Mediating Role of Caregiver Confidence

BACKGROUND: Caregiver contributions (CC) to heart failure (HF) self-care maintenance (ie, CC to maintaining HF stability) and management (ie, CC to dealing with HF signs and symptoms) improve patient outcomes, but it is unknown whether caregiver preparedness influences CC to self-care and whether caregiver confidence mediates this process. OBJECTIVES: We evaluated the influence of caregiver preparedness on CC to HF self-care maintenance and management and the mediating role of caregiver confidence. METHODS: This is a secondary analysis of the MOTIVATE-HF study. Patients were 18 years or older, with a diagnosis of HF in New York Heart Association classes II to IV, who had insufficient self-care and did not have severe cognitive impairment. Patients' informal caregivers were those people inside or outside the family who gave most of the informal care to the patients. We used the Caregiver Preparedness Scale and the Caregiver Contribution to Self-Care of HF Index. We tested a path analysis model and the indirect effects. RESULTS: Caregivers (n = 323) were 55 (SD, 15) years old on average and predominantly female (77%). The path analysis showed that higher scores in caregiver preparedness were associated with higher scores in caregiver confidence. In turn, higher caregiver confidence was associated with higher CC to self-care maintenance and management. Caregiver confidence mediated the association between caregiver preparedness and CC to self-care maintenance and management. CONCLUSIONS: Caregiver confidence may play a role in CC to self-care. Interventions to improve CC to HF self-care should not only be focused on improving caregiver preparedness but also should consider the role of caregiver confidence.

Access source material through DOI

Uncertainty in Transition of African American Caregivers

The purpose of this study was to gain an understanding of the ambiguities and uncertainties experienced by a diverse group of African-American caregivers. The study applied Schlossberg's transition theory (TT) and Mishel’s revised uncertainty theory to narratives of self-identified African-American caregivers who provided care at least 5 h a week. The men (6) and women (8) were mostly unmarried, mostly caring for a parent or grandparent. The caregivers’ average age was 52 (SD = 19; ages ranged from 24 to 82 years); and the care recipients’ average age was 84 (SD = 9). Six care recipients had dementia and the remainder had multiple disease diagnoses. Narratives were obtained by in-depth interviews or focus group discussions. These were audio-recorded, transcribed verbatim professionally and analyzed independently by trained coders. Schlossberg’s TT contextualized whereas Mishel’s RUIT illuminated the characteristics of the transition, its associated uncertainty, and their relationship to the development of caregiver stress. Situational factors such as difficulties with illness symptoms of the care recipient, conflict between previous experience and current expectations and the adjustments to the new caregiving role, burdened younger caregivers more than older caregivers. Self-factors related to lack of knowledge about the illness and feelings of lack of control. Social support was predominantly provided by family members, and its absence resulted in conflict among siblings and caregiver stress. The most common coping strategies include religiosity, expectations of reciprocity, and coming to terms with the uncertainty. Understanding the feelings, perceptions and needs of caregivers in transition is tantamount to providing nursing care. 

Access source material through DOI

The association between activities of daily living and long hours of care provided by informal caregivers using a nationally representative survey in Japan

Highlights

  • We determined the relationship between long hours of care and the assistance in each activity of daily living (ADL) element.

  • The assistance in wiping of the body, dressing and toileting were significantly associated with longer hours of care .

  • To support caregivers effectively, it is important to consider the kinds of ADL elements of the care recipients.

Access source material through DOI

Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

Access source material through DOI

Understanding family caregivers' needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs. 

Access source material through DOI

Making Women's Unpaid Care Work Visible in India: Importance and Challenges

From the 1970s onward, the work performed by women within the household was critically examined, and a feminist critique of Marx emerged. The critique was first developed in the Campaign for Wages for Housework, founded in 1972, by Mariarosa Dalla Costa, Selma James and other renowned feminists. A major contribution of this critique was to highlight women's domestic labor in the process of capital accumulation, an issue which Marx did not address. This movement therefore sought to make visible women's work which was naturalized into nonexistence by capitalism. This problem of visibility exists all over the world, and women continue to bear the brunt of unpaid care work; they are perceived as "natural" caregivers and shunned for seeking paid care services. Although this phenomenon is common all over the world, this paper will deal with the importance of making women's unpaid work visible in India, as India is a developing country and more people tend to engage in unpaid subsistence work (production for self-consumption, unpaid work in family enterprises and care related work) in developing countries compared to wealthier countries. Portraying the importance and challenges of making women's unpaid care work visible in India can trigger economic and social development of the country. This paper aims to put forward the value of women's unpaid care work in India, and to pinpoint the obstacles that stand in the way of exposing their unpaid contributions. Considering the context of India this paper will examine the following questions: 1. Why is it important to make unpaid care work visible? 2. What are the challenges of making unpaid care work visible? The questions mentioned above will be answered by looking at suitable literature so that theoretical and methodological issues that have emerged can be brought forward and the problems and recommendations can be grasped to arrive at a conclusion.

Original source (some source materials require subscription or permission to access)

Decision-Making in Dementia Care: a Qualitative Study of Chinese Family Caregivers in Singapore

Extract: Besides their feeling of helplessness and uncertainty in making treatment decisions on behalf of PWD, family caregivers tended to rely on medical practitioners to make difficult EOL care decisions. 

Original source (some source materials require subscription or permission to access)

Caregiving Self-efficacy and Knowledge Regarding Patient Positioning Among Malaysian Caregivers of Stroke Patients

Background Most family caregivers of stroke patients in Malaysia do not receive adequate prior preparation or training. This study aimed to determine levels of patient positioning knowledge and caregiving self-efficacy among caregivers of stroke patients. Methods This cross-sectional study was conducted at an urban teaching hospital involving 128 caregivers of stroke patients. The caregivers were conveniently sampled and completed the data collection forms, which comprised their socio-demographic data, patients' functional status, the Caregiving Knowledge For Stroke Questionnaire: Patient Positioning (CKQ-My(C) Patient Positioning) to measure caregiver's knowledge on patient positioning, and the Family Caregiver Activation Tool (FCAT(C)) to measure caregivers' self-efficacy in managing the patient. Descriptive and multivariate inferential statistics were used for data analysis. Results Among the caregivers sampled, 87.3% had poor knowledge of positioning (mean score 14.9 +/- 4.32). The mean score for FCAT was 49.7 +/- 6.0 from a scale of 10 to 60. There was no significant association between knowledge on positioning and self-efficacy. Multiple linear regression showed that caregivers' age (B = 0.146, p = 0.003) and caregiver training (B = 3.302, p = 0.007) were independently associated with caregivers' self-efficacy. Conclusion Caregivers' knowledge on the positioning of stroke patients was poor, despite a fairly good level of self-efficacy. Older caregivers and receiving caregiver training were independently associated with better caregiver self-efficacy. This supports the provision of caregiver training to improve caregiver self-efficacy.

Access source material through DOI

Barriers and facilitators of adherence to a perioperative physical activity intervention for older adults with cancer and their family caregivers

Purpose: Perioperative physical activity behavior change in older adults with cancer is complex. Identifying the barriers and facilitators to physical activity before and after surgery can help predict adherence and optimize outcomes. We aimed to determine the barriers and facilitators of adherence to a perioperative physical activity intervention in older adults with lung and gastrointestinal (GI) cancers and their family caregivers (FCGs). Methods: A qualitative analysis of physical therapy/occupational therapy (PT/OT) baseline geriatric/functional assessment and intervention sessions notes were undertaken (N = 34 dyads). Written text documents (N = 6 independent PT/OT notes per dyad) were transcribed into a spreadsheet for coding and thematic analysis. Content analysis qualitative approach was used to identify themes and guide data interpretation. Results: Ten themes for barriers and five themes for facilitators emerged, reflecting barriers to and facilitators of perioperative physical activity adherence. Primary barriers to adherence included comorbid health conditions, physical symptoms, functional limitations, anxiety, other roles and responsibilities, unexpected life events, lack of time and motivation, not accustomed to physical activity, and environment/weather. Facilitators that enabled intervention adherence included physical activity as part of routine, coping strategies, setting goals for motivation, social/family support, and experiencing benefits from walking. Conclusions: Barriers and facilitators to a perioperative physical activity is multidimensional, and focused on social-ecological determinants of health behaviors, including intrapersonal, interpersonal, and environmental factors. Perioperative physical activity interventions for older adults with cancer and their FCGs should integrate strategies to promote self-efficacy, support realistic activity goals, enhance motivation, and optimize social support.

Access source material through DOI

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Objective: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed. Methods: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). Results: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact. Conclusion: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. Practice implications: This review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.

Access source material through DOI

Estranged relations: Coercion and care in narratives of supported decision-making in mental healthcare

Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare. 

Access source material through DOI

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

OBJECTIVE: Assistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers' experience of using AT in supporting and caring for persons with dementia who live at home. DESIGN: Qualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes. SETTING: Community-based within the UK. PARTICIPANTS: Twenty-three (14 women, nine men) adult carers of persons with dementia who have used at least one AT device. RESULTS: All participants reported benefiting to varying degrees from using AT. There were five themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses. CONCLUSIONS: Carers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.

Access source material through DOI

Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians

Chorea, a hallmark symptom of Huntington's disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea's impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers. Data from focus groups of individuals with manifest HD (n = 8 early-stage HD; n = 16 late-stage HD), individuals at-risk or prodromal HD (n = 16), family HD caregivers (n = 17), and HD clinicians (n = 25). Focus group recordings were transcribed verbatim and analysed via constant comparison to identify meaningful and salient themes of living with chorea. Global themes of chorea's impact identified included: watching for chorea, experiences of stigma, and constraints on independence and relationships. Themes distinct to specific respondent groups included: Vigilance (at risk, prodromal); adaptation to chorea (early-stage); loss of autonomy and social life (late-stage); monitoring engagement (family caregivers) and safety (clinical providers). Living with chorea significantly constrains daily functioning, interactions, and HRQOL across the HD disease spectrum. Addressing these impacts via appropriate management of chorea can potentially enhance functioning, HRQOL, and overall satisfaction for persons with HD and their families.

Access source material through DOI

Leveraging institutional support for family caregivers to meet the health and vocational needs of persons with disabilities

Background: Family caregivers might enhance veteran engagement in health and nonhealth services (i.e., vocational/educational assistance). Purpose: To describe how veterans with disabilities perceive their recovery needs, identify types of social support from caregivers that help veterans engage in Veterans Affairs (VA) health and nonhealth services, and explore participant views of VA institutional support for caregivers to help veterans engage in these services. Methods: Joint in-depth qualitative interviews with U.S. veterans and family caregivers (n = 26). Findings: Caregivers performed social support functions that helped veterans engage in health and vocational/educational services and institutional support from VA enhanced caregivers’ capacity. Discussion: Caregivers are well positioned to align health and nonhealth services with patient needs to enhance recovery. Staffing a point person for caregivers within the health system is key to help families develop a coordinated plan of treatment and services to improve patient success across health and nonhealth domains. Nurses are well suited to perform this role. 

Access source material through DOI

Resuming Normal Life as a Family Caregiver During Drip-Like Recovery of Older Persons With Cognitive Impairment Recovering From Hip Surgery: A Grounded Theory

Purpose: This study was undertaken to develop a theoretical framework explaining family caregiving processes for older persons with cognitive impairment recovering from hip fracture surgery. Design and Methods: In this grounded theory study, data were collected in audio-recorded face-to-face interviews with 21 family caregivers. Among these caregivers, 14 cared for hip-fractured persons with cognitive impairment, and seven cared for those without cognitive impairment. Caregivers were interviewed five times after patients’ discharge: at 1 week and at 1, 3, 6, and 12 months. Data were analyzed by constant comparative analysis. Findings: The core category explaining the family caregiving process for hip-fractured persons with cognitive impairment was “resuming normal life during drip-like recovery.” This category captures the slowness of the recovery process, as slow as dripping water. During the early postoperative period, caregivers attempted to gain control of the postoperative situation, using various maintenance and improvement strategies to deal with the chaos in individuals and the family and to protect hip-fractured persons with cognitive impairment from further harm. The goal of recovery was to get back to their original life. Conclusions: Family caregivers of hip-fractured older persons with cognitive impairment needed to deal with more complex chaotic situations, exerted more efforts to administer safety measures, and required more time to achieve a stable life pattern. Clinical Relevance: Since postoperative recovery was perceived as extremely slow, family caregivers of hip-fractured older persons with cognitive impairment should be patient regarding recovery and be informed before hospital discharge of different strategies to resume normal life during postoperative recovery. 

Access source material through DOI

Care organising technologies and the post-phenomenology of care: An ethnographic case study

Care organising technologies are software applications that are intended primarily for informal carers, to help organise, document and coordinate caring work. These may be purchased privately or provided as part of state support. Take-up to date remains low. Based on empirical case studies of three such technologies and drawing on post-phenomenology and political science, we examined people's experience of caring when caring technologies find a way into their lives. Our findings show how care organising technologies have evolved in a political context that assumes informal support will supplement and sometimes substitute for state support. Technologies were largely designed to foreground the technical and organisational aspects of care such as planning meals, coordinating medication, and allocating and monitoring tasks among carers. For carers, the result was often a flattening of the landscape of care such that the socio-emotional work of caring was rendered invisible and relations between cared-for and caregiver were configured in narrow transactional terms. For a small number of carers, the focus on tasks was out of tune with their (often emotionally charged) experiences of care and led to active rejection of the technology. However, we also found examples of caregivers and the individuals they cared for using technologies adaptively to facilitate and embed existing care relationships. In these examples, the material/technical, socio-emotional and bodily aspects of caring were interwoven with the situated context of close, unique and evolving relationships. We conclude that the design and development of caring technologies would benefit by being informed by a broader orientation of caring as a relational practice. 

Access source material through DOI

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

Access source material through DOI

Caregiver involvement in psychiatric inpatient treatment - a representative survey among triads of patients, caregivers and hospital psychiatrists

Aims Studies on the frequency of caregiver involvement in representative inpatient samples are scarce. The aim of our study was to conduct a representative survey on caregiver involvement in routine inpatient care involving all three parties (patients, caregivers, psychiatrists). Therefore, we performed face-to-face interviews consisting of open-ended questions to gain a deeper understanding of when and how caregivers are involved in care treatment and to identify which topics are mainly discussed. Methods This cross-sectional survey included inpatients from 55 acute psychiatric wards across ten psychiatric hospitals, their treating psychiatrists and, when possible, their caregivers. In total, we performed semi-structured face-to-face interviews with 247 patients, their treating psychiatrists and 94 informal caregivers. Each psychiatrist named the next two to three patients to be discharged. After a patient had given informed consent, the interview was performed by a researcher. In addition, the psychiatrist and, when possible, the primary caregiver identified by the patient, were also interviewed. Results It was perceived by both patients and psychiatrists that contact between caregiver and psychiatrist had taken place in one-third of the patient cases. Predictors for psychiatrist-caregiver-contact were revealed in the patient's diagnosis (schizophrenia), a lower history of inpatient stays, and the respective hospital. According to psychiatrists the most frequent subjects of discussion with caregivers involved therapeutic issues and organisational and social-psychiatric topics (e.g. work, living and social support). Patients and caregivers stated that psychiatric treatment and the diagnostic classification of the mental illness were the most frequent topics of conversation. For all three groups, the most often cited reason for missed caregiver involvement was the subjective perception that a caregiver was not in fact needed. Conclusions Whether or not caregivers were contacted and involved during an inpatient stay strongly depended on the individual hospital. The frequency of involvement of caregivers can certainly be increased by changing processes and structures in hospitals. All three parties (patients, caregivers and psychiatrists) most often stated that the caregiver was not involved in the treatment because they thought it was unnecessary. Evidence demonstrates the positive effect of caregivers' involvement on the therapeutic process but also on the well-being of the caregiver, therefore it is necessary to increase awareness of this evidence among all three interest groups.

Access source material through DOI

Experiences of Family Caregivers of Individuals With Chronic Psychiatric Illness in Turkey: A Qualitative Study

The purpose of the current descriptive qualitative study was to reveal experiences of family caregivers of individuals with chronic psychiatric illness. Family caregivers who provided care to 16 individuals with chronic mental illness were interviewed. Three themes emerged from the interviews: Illness Management, The Caregiver's World: Changes and Effects, and Coping From the Caregiver's Point of View. Understanding the experiences of family caregivers contributes to content development of family intervention programs. 

Access source material through DOI

“I’ve learned to just go with the flow”: Family caregivers’ strategies for managing behavioral and psychological symptoms of dementia

Background and objectives: Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design: As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results: Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion: Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being. 

Access source material through DOI

Persistent barriers and facilitators to seeking help for a dementia diagnosis: A systematic review of 30 years of the perspectives of carers and people with dementia

Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. Results: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. Conclusions: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers. 

Access source material through DOI

“I was Confused About How to Take Care of Mom Because this Disease is Different Everyday”: Vietnamese American Caregivers’ Understanding of Alzheimer’s Disease

Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.

Access source material through DOI

Informal support for people with Alzheimer's disease and related dementias in rural Uganda: a qualitative study

Background The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia. Objective Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda. Methods This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers. Results The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia. Conclusion The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.

Access source material through DOI

Migrant caregivers of older people in spain: Qualitative insights into relatives’ experiences

The traditional structure of families is undergoing profound changes, causing the so-called “crisis of family care.” This study describes the experiences and emotions of the family member who hires migrant caregivers for the older people. This is a qualitative study using a phenomenological design with nine women participants between 53 and 72 years of age. The data collection was carried out through two in-depth interviews and a focus group. There were three major topics: (1) the women in this study recognized that they were not able to take care of the family member directly, due to their responsibilities as female workers and mothers. The fact that migrant caregivers were chosen was conjunctural, where economic reasons were more important. (2) The family members supported the caregivers by teaching them about care and also resolving conflicts produced by culture shock. (3) Trusting the caregiver was a gradual process; the family members felt a complex set of emotions (insecurity, gratitude for the help, moral obligation). In conclusion, they wanted a caregiver who would provide the elder dependent with the love and compassion that they, as daughters, would provide if they had time to do so. The family became the caregiver’s managers and assumed the responsibility of training and helping them. 

Access source material through DOI

Lived experiences of caregivers of patients with borderline personality disorder: A phenomenological study

Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers’ experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes (“life in hell”, “chain to the feet”, and “black shadow of stigma”) and six sub-themes (“disrupted from the life”, “self-discrepancy”, “care bottlenecks”, “in the fence of restriction”, “society dagger” and “resort to secrecy”) emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers. 

Access source material through DOI

"It's just part of life": African American daughters caring for parents with dementia

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

Access source material through DOI

Guidance for behavioural interventions aiming to support family support providers of people with spinal cord injury: A scoping review

Rationale: Research has extensively examined the adverse outcomes of being family support provider also known as a family caregiver, of someone with spinal cord injury (SCI) such as psychological distress, poor health, and burden. Despite clear evidence of the negative impact of this social role, few interventions exist aiming to support family support providers of people with SCI. Objective: This scoping review aimed to guide future intervention development by identifying the components necessary to develop an intervention to support SCI family support providers using the Behaviour Change Wheel (BCW). Methods: Electronic databases (CINAHL, PsycINFO, Medline, Embase) were searched in May 2017. Articles relating to outcomes and/or behaviours of support providers of people with SCI were identified. Intervention components of the BCW, including behaviours, factors influencing behaviours, intervention content, and evaluation methods, were extracted from included articles. Results: Of the 59 included articles, most emphasized the outcomes of being a support provider but provided little evidence of behaviours, which may influence such outcomes. The most commonly identified behaviours included engaging in leisure time or daily activities, problem-solving, and providing support. Very few measures were used to measure engagement in behaviours objectively. The literature suggests that behaviours are often influenced by family support providers' physical and social environments. However, barriers may vary between behaviours and contexts. Conclusion: The results of this review show that there are many viable behavioural targets for intervention. Therefore, intervention efforts may need to be tailored to individuals' needs. A promising intervention approach may be to use a theory which promotes change in the ecological context of family support providers while encouraging behavioural strategies to overcome individual barriers. Future research should further examine the factors that influence specific behaviours to more comprehensively understand the context of the behaviour as well as effective intervention strategies to promote change.

Access source material through DOI

“I Know Who I Am; the Real Me, and That Will Come Back”: The Importance of Relational Practice in Improving Outcomes for Carers of People With Dementia

Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care. 

Access source material through DOI

How Children of Parents With Dementia Can Make Their Subject Positions Understandable and Meaningful

The families of people diagnosed with dementia are commonly first-in-line caregivers. This can have a considerable effect on their lives, health, and relationships. However, few studies have focused on the children in such families. Therefore, the aim of this study was to describe how children, in their own narratives, construct themselves as subjects growing up and caring for a parent with dementia. The study applies discourse analysis. The findings show three subject positions: parent to your parent(s), orphan with parents, and time traveler stuck in time. There is a need to support these children, both as children and as young adults. More knowledge is necessary regarding the kind of support they might want or need. For health care professionals, it is important to know that it might not always be easy to ask for information or support as a child caring for a sick parent.

Access source material through DOI

The care capacity goals of family carers and the role of technology in achieving them

Background: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. Methods: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. Conclusions: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers. 

Access source material through DOI

Reasons for Drug Administration Problems and Perceived Needs for Assistance of Patients, Family Caregivers, and Nurses: A Qualitative Study

OBJECTIVE: Investigation of drug administration problems, respective causes, and needs for assistance. METHODS: Focus group discussions with patients, family caregivers, and nurses were conducted using a semi-structured interview guideline for a focused exploration of the participants' drug administration experiences and perceived needs for assistance. All discussions were audio-recorded and video-recorded, verbatim transcribed, and analyzed according to Mayring's qualitative content analysis. RESULTS: In total, 6 focus group discussions were conducted. The qualitative content analysis revealed that patients and family caregivers frequently trivialized drug administration, were unaware of errors, and primarily blamed the dosage form of causing administration problems. Nurses also considered health-care system-related conditions and patient factors as potential causes of administration problems. CONCLUSIONS: The administration problems and perceived causes were multifaceted and often directed toward inappropriate dosage forms or health-care system-related conditions rather than critically questioning the medicine user's administration skills. To increase medicine users' motivation to scrutinize wrong administration practices, health-care professionals should consider individual perspectives on administration problems and perceived causes, assist medicine users' to identify the true cause of a distinct problem, and provide individualized support.

Access source material through DOI

Caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer in Ghana

Introduction Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context. Aim To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer. Methods In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data. Results Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring. Conclusion Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.

Access source material through DOI

The influence of the combination of visiting frequency of family caregivers and pre-admission frailty status on dependency after discharge among hospitalized older patients: a clinically-based prospective study

Purpose: This study aims to determine whether the combination of visiting frequency of the family caregiver and frailty status has an additive effect on the incidence of dependency among hospitalized older patients. Methods: We analyzed the prospective cohort data of hospitalized older patients (65 years and older) with internal medical problems. The main outcome showed patients’ dependency from admission to a month after discharge. We investigated the visiting frequency of family caregivers and the frailty status and categorized respondents into 4 groups: group 1, visiting frequency 3–7 times a week and non-frailty; group 2, visiting frequency 0–2 times a week and non-frailty; group 3, visiting frequency 3–7 times a week and frailty; or group 4, visiting frequency 0–2 times a week and frailty. We used the Cox proportional hazards regression to estimate the hazard ratios (HR) and confidence intervals (95% CI) of relationships between the combination of visiting frequency and frailty status, and dependency. Results: A total of 182 participants who completed the follow-up were analyzed. During the follow-up period, 45 participants (24.7%) showed some dependency. The hazards regression showed that the low visiting frequency group with presence of frailty had the most increased dependency, compared to other groups (adjusted HR 8.61 [95% CI 3.38–21.98]). Conclusions: The coexistence of low visiting frequency and the presence of frailty influenced dependency more strongly than each factor alone. These findings suggest that the combination of visiting frequency and frailty status is a useful predictor for future dependency. 

Access source material through DOI

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.

Access source material through DOI

Caregivers of Patients With Brain Metastases: A Description of Caregiving Responsibilities and Psychosocial Well-being

BACKGROUND: There are increasing numbers of cancer patients with brain metastases, and there is a high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers (FCGs) of cancer patients with brain metastases. This study aimed to address this gap in the literature. METHODS: Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire. RESULTS: Participants were 21 FCGs of patients with brain metastases. Many caregivers are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. CONCLUSION: Although FCGs reported mitigating factors such as social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.

Access source material through DOI

The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID. 

Access source material through DOI

Development and validation of the scale for partnership in care—for family (SPIC-F)

This study aims to develop and validate the Scale for Partnership in Care between staff and families of older adult nursing home (NH) residents—for Family (SPIC-F). The components of partnership were identified on the basis of literature reviews and focus group interviews. The content validity of 41 preliminary items was verified by 10 experts, and a pilot study was conducted. The reliability and validity of the instrument was tested on 330 families of older adult NH residents. The final instrument comprised 20 items in three categories: professional caring and support, cooperative relationship and information sharing, and participation in care. Each item is rated on a four-point Likert scale, with total scores ranging from 20–80. The reliability of the instrument was 0.95, and test–retest ICC was 0.83. This instrument could be utilized to develop interventions to establish an efficient partnership and assess its outcomes. 

Access source material through DOI

Co-creation of a family-focused service model living with younger onset dementia

Families living with younger onset dementia face unique social challenges, which services do not currently address. There is a gap in understanding the experiences of families affected by younger onset dementia, including the interactions and relationships within the family units, and with existing services and supports. In this qualitative research study, semi-structured interviews were conducted across Australia with seven health and social care providers, five persons living with younger onset dementia, six spouse/carers, and 17 children. A thematic analysis was conducted using a theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model. Two central themes emerged in the data: (1) Understanding the social demands on the family - lifecycle challenges living with younger onset dementia from a social and family context; and (2) Interactions of health and social care providers with families living with younger onset dementia - opportunities and challenges in providing support and services geared to a whole family approach. In order to provide families for those living with younger onset dementia with optimal assistance and support, co-creation of a family-focused services model is proposed. Its purpose is to support effective therapeutic interactions and service development among service users, service providers, and stakeholders.

Access source material through DOI

The lived experience of supporting people with mild stroke

Background: Mild stroke occurrences are rising and in order to comprehensively understand the experience of this health phenomenon, the context in which people with mild stroke live must be explored. Spouses are an important part of the lives of this population, but their experiences are yet to be fully understood. Aims/Objectives: To answer the question: “What is the essence of the mild stroke experience from the perspective of spouses during the first 9-months after acute hospital discharge, in Australia?” Materials and Methods: Qualitative study involving four spouses at 9-months post-acute hospital discharge for their family member. Interpretative phenomenological analysis used to analyze interview transcripts. Results: Two themes identified: (1) Activities gained but time lost, and (2) Small changes but big impacts. The first theme portrays the increase in daily activity that spouses experienced due to caregiving related activities, which impacted on their occupational participation. The second highlights the impact that people with mild strokes’ behavioral and emotional changes can have on spouses. Conclusions and Significance: Whilst spouses generally return to their daily routines after a family members’ mild stroke, some will experience increased time pressures and occupational disruptions. Health providers should prepare spouses for behavioral and emotional changes in people with mild stroke. 

Access source material through DOI

Family Caregiving During the Hospitalization of an Older Relative

The purpose of the current study was to examine the role and activities of family caregivers for older relatives during hospitalization. The Family Care Actions Index was completed by 293 family caregivers of hospitalized older adults. Results indicated that the scope of caregiving activities extended beyond providing care to the patient and included working together with the health care team. Activities requiring interaction with providers, such as care coordination, planning, evaluation, and oversight, were frequently performed by family caregivers. Family caregivers are assuming a greater role during the hospital stay of older relatives. Partnering with family caregivers provides hospital staff an opportunity to improve care, outcomes, and satisfaction. 

Access source material through DOI

“I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience

There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do the parents without YOD understand and negotiate their ever-changing parenting role, and how do their children experience it? We conducted in-depth, semi-structured interviews with four parents without YOD (coincidentally all mothers) and eight children ages 16–20 (3–18 when parent was diagnosed) regarding the changing nature of the parental-child relationship. These data were analyzed using thematic narrative analysis, in which respondents' material is closely read as it is gathered and analyzed for patterns. Three primary themes emerged. First, there are significant changes in family structures and role. Mothers increasingly assume all parental responsability. Children assume roles of carers and earners, and at times reluctant decision-making partners. Such responsabilities can feel overwhelming at times. However, the children discribed not wanting to burden mother with their feelings and experience, a second prominent theme. Finally, such muting of their experience likely contributes to mothers feeling they are managing the YOD so as to minimize the impact on their children, creating divergent experiences of the YOD on family life. Facilitating family members' articulation of what feel like “inadmissible” feelings, improving familial communication, and developing a range of support and resources are all important areas for intervention. 

Access source material through DOI

Knowledge, attitude and health-seeking behavior among family caregivers of mentally ill patients at Assiut University Hospitals: a cross-sectional study

Background: Mental illness is associated with misunderstanding and unfavorable attitude worldwide. The belief in its spiritual nature made traditional healers the main service consultants for mentally ill patients. The present study is a cross-sectional study conducted among 425 main family caregivers of mentally ill patients at Assiut University Hospital. The objective of the study was to assess the caregivers’ knowledge and attitude towards mental illness as well as their health-seeking behavior for their mentally ill relatives. Results: The studied caregivers had low scores of knowledge and attitude towards mental illness. Age of the caregivers, their education, and the type of first consulted care and aggressive behavior of the mentally ill relatives were the significant predictors of caregivers’ knowledge and attitude towards mental illness. The majority of caregivers (80.2%) sought advice for the first time from traditional healers. Traditional healers referred only 16.4% of caregivers’ mentally ill relatives to psychiatric care. Conclusion: The studied caregivers had poor knowledge and a negative attitude towards mental illness. Traditional healers were the main consulted care. So, increasing awareness of mental illness is highly recommended. 

Access source material through DOI

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. 

Access source material through DOI

Young carers research project: Summary of findings

A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.

During the peak of the COVID-19 lockdown, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. This summary report includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.

This report shares insights from young carers across a range of themes, including education, employment, service provision and relationships, embedding the young carer voice throughout. These insights will help to inform ongoing and future service provision, research and systemic advocacy conducted by Carers NSW and our partners and stakeholders.

A review of existing research literature (see Appendix I) and internal consultation with Carers NSW staff working with young carers, conducted in the scoping phase of this project, identified that young carers are often isolated and experience socio-economic disadvantage as a result of their caring responsibilities. However, they are often reluctant to disclose their caring responsibilities to others and commonly perceive their own needs and experiences as less important than those of the person they care for. These factors can make it more difficult for researchers and others to successfully engage with young carers.

Original source (some source materials require subscription or permission to access)

Informal caregiver quality of life in a palliative oncology population

Purpose: Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program. Methods: IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model. Results: Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient’s spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden. Conclusions: Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.

Access source material through DOI

Providing care to a family member affected by head and neck cancer: a phenomenological study

Background: Cancer is recognized as a family illness as many head and neck cancer (HNC) patients after treatment require assistance from a family caregiver throughout the rest of their life. The purpose of this study was to explore the lived experience of primary family caregivers of HNC patients dealing with laryngectomy regarding their complex supportive role. Methods: Phenomenological study based on individual interviews of twelve primary caregivers of HNC patients, recruited by purposeful sampling. Interview contents were analyzed in depth, in accordance with Colaizzi’s descriptive analysis framework, to explore and identify significant themes and subthemes. Results: Analysis evidenced three main topics and subthemes embracing various aspects of the caregiver’s lived experiences: (1) experiencing disease and the pathway of care, (2) handling changes to everyday life, and (3) support received by others. Conclusion: Given the essential role the caregiver has in the patient’s post-treatment recovery, future planning of HNC patient care must consider the caregivers’ needs. In order to guarantee an appropriate and effective health professional care, it is important to consider caregivers’ issues and needs as part of HNC patient care planning from the diagnosis to the follow-up. 

Access source material through DOI

Supporting informal carers during the covid-19 pandemic

A working list of things to be aware of/ consider in supporting informal carers (family and friends who support patients in an unpaid role) impacted by COVID-19. This is partly evidence-based and partly grounded in our combined experience of working in applied research on informal carer support needs

Original source (some source materials require subscription or permission to access)

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. RESULTS: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. CONCLUSIONS: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact. 

Access source material through DOI

Impact of COVID-19 pandemic restrictions on community-dwelling caregivers and persons with dementia

Restrictions related to the 2019 novel coronavirus (COVID-19) pose unique and significant challenges for community-dwelling caregivers and people with dementia, including disrupted routines, a lack of structure, decreased access to respite care, and new or worsening safety issues related to interpersonal violence and hygiene. In addition to identifying issues confronting caregivers, the authors also describe possible ways to address some of these pressing concerns.

Access source material through DOI

Caregivers of patients with hematological malignancies within home care: A phenomenological study

The role of caregivers in homecare settings is relevant to the patient’s wellbeing and quality of life. This phenomenon is well described in the literature for the oncological setting but not specifically for that of hematological malignancies. The aim of this study was to explore the experience of primary caregivers of patients with hematological malignancies within home care. We conducted a phenomenological study based on interviews with 17 primary caregivers of hematological patients. Analysis of the contents led to the identification of five main themes. Perhaps, the innovative aspects of this study can be summarized in three points: This service was demonstrated to fulfil the ethical aspects of providing the patient with a dignified accompaniment to the end of life. Secondly, the efficiency of the service and the benefit are directly dependent on the caregivers’ wellbeing, so knowledge of the dynamics and emotions involved can lead to the development and implementation of programs for hematological malignancies. Lastly, a collaborative caregivers–professionals relationship can improve a sense of accomplishment for all parties involved, lessening the family’s frustration related to not having done their best. Home care brings significant benefits for both the patient and the caregivers and fulfils the ethical obligation of providing the patient dignified end-of-life care. 

Access source material through DOI

Support in the context of allogeneic hematopoietic stem cell transplantation - The perspectives of family caregivers

Background and aim: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers’ experiences of providing and receiving support during allo-HSCT. Method: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data. Results: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health. Conclusions: Family caregivers’ risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support. 

Access source material through DOI

Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual’s use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant’s perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact. 

Access source material through DOI

Investigating 'optimal time': perspectives on the timing of people living with dementia moving into care homes: research findings

This briefing summarises the findings of a study into whether there is a universal optimal time for people living with dementia to move to a care home. The research drew on the experiences of people living with dementia and family carers, as well as social workers and care home managers. It found that factors to consider include the wellbeing of the person living with dementia, the ability of family members to support them and the availability of suitable care home places.

Original source (some source materials require subscription or permission to access)

Caring for older people: relational narratives of attentiveness, commitment and acceptance

Informal care evolves from an existing relationship with the care recipient. This study aims to understand the relational nature of such care. Six participants caring for a spouse or parent chose their own methods of data collection, including keeping a journal, telephone interviews or face-to-face interviews. Participants drew on personal narratives to reveal different identities, which included a guardian, a partner, a coper, and a campaigner on behalf of the person receiving care. These findings demonstrate how providing good care is part of each carer’s relational identity. Acknowledging the relational nature of care will enable better support for carers.

Access source material through DOI

The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

Original source (some source materials require subscription or permission to access)

Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
Original source (some source materials require subscription or permission to access)

Caring Through COVID: Life in Lockdown

This report sets out the findings of a national survey undertaken by Family Carers Ireland between April 14th and May 5th 2020 which examined family carers’ experience of caring during the COVID-19 pandemic. The online survey was completed by 1,307 current family carers representing a range of caring situations – parents caring for children with a disability, those caring for an adult, carers of older people and those caring for multiple people. The survey was open to respondents 18 years and older. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 1,307 carers. A family carer is someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness, disability or frailty.

Original source (some source materials require subscription or permission to access)

Carers need respite from care. COVID-19’s limiting the options & pushing many to breaking point

One in ten Australians provide care for a loved one, sustaining families and saving governments huge sums on care services. But what do they do now?

Original source (some source materials require subscription or permission to access)

Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis

Background and Objectives: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home.; Research Design and Methods: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening.; Results: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare.; Discussion and Implications: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

Access source material through DOI

Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes

Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home. Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes. Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self. Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.

Access source material through DOI

Thai family caregivers' experiences helping dependent elders during medical emergencies: a qualitative study

Aim: To describe the experience of family caregivers of dependent elders during medical emergencies in rural settings in Thailand.; Methods: This was a descriptive qualitative research using in-depth interviews of 15 participants. Content analysis was applied to transcribed interviews, including data reduction as well as identification of key words, phrases, and themes.; Results: The findings described the experience of caregivers of dependent older persons who faced emergency illness. Most of the family caregivers described their roles in unusual situations as practising assessment first and doing something that may relieve the symptoms experienced by the older persons before initiating and calling for help from relatives, neighbors, and, finally, the emergency medical services. The caregivers four main barriers to them feeling competent: (1) lack of home monitoring devices, (2) inexperienced caregivers in assessing warning signs to report during emergency care, (3) lack of information and understanding of patient rights in emergency health services, and (4) delayed arrival of emergency medical services.; Conclusions: There are barriers to the development of competency in caregiving skills, especially in assessing and recognizing warning signs and initiating first aid accurately before the arrival of the emergency health care team.

Access source material through DOI

Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review

Background: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID.; Method: We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country.; Results: The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation.; Conclusions: Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.

Access source material through DOI

Prevalence and predictors of family accommodation in obsessive–compulsive disorder in an Indian setting

Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.

Access source material through DOI

Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions

This cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers' perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.

Access source material through DOI

Managing Urinary Incontinence

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers. This article is the second of two that provide an update on urinary incontinence and its management in older adults. It includes an informational tear sheet-Information for Family Caregivers-that contains links to the instructional videos. To use this series, nurses should read the articles first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

Access source material through DOI

Informal carers' experiences of caring for a person with heart failure in a community setting

Heart failure (HF) is a life-limiting condition with a poor prognosis and unpredictable disease trajectory. HF brings physical and emotional challenges for patients and their carers. Predominantly the informal carer population consists of older females, however, caring is evolving as longevity increases and complex conditions are becoming more commonplace. Consequently, more men and younger people are contributing to daily care. The aim of this study was to explore the positive as well as negative dimensions of caring in HF across a range of carer characteristics. Fourteen semi-structured interviews were conducted with informal carers of people with HF in the UK (median age 71; female 10). Interviews were transcribed verbatim and analysed with the assistance of NVivo10 using Interpretative Phenomenological Analysis. Findings from the study demonstrated that most participants considered caring as integral to their relationships. Dimensions facilitating positivity in caring included compassion, thoughtfulness and understanding. An ability to cope was influenced by a range of attributes including quality of relationships in the carer/patient dyad and with formal social care providers who offered access to tailored and timely information and support. The unpredictable HF disease trajectory influenced the carer experience and enhanced the challenges encountered. The information needs of carers were not always adequately met and younger adult carers expressed particular difficulties with appropriate information and support. Expectations of our informal carer population are increasing and evolving. Health and social care policy requires innovative proposals for the funding and delivery of health and social care that has the contribution made by informal carers at its core.

Access source material through DOI

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach

Aim: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. Design: A descriptive qualitative study was conducted using individual interviews. Methods: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi‐structured interviews took place between April ‐ November 2018. The INDividually EXperienced QUAlity of Long‐term care framework was used to guide data collection and content analyses. Results: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. Conclusion: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. Impact: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship‐centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

Access source material through DOI

Health characteristics and outcomes of caregivers in the United States: An Analysis of the 2017 Health Information National Trends Survey (HINTS)

Background: Caregivers are essential for assisting people with disabilities to fully participate in their communities. Past research has primarily focused on family caregivers in the U.S. providing care to older adults rather than children and adults with disabilities.; Objective: This paper examines the demographic and health characteristics of caregivers of children and adults with disabilities across the lifespan using data from the 2017 Health Information National Trends Survey (HINTS).; Methods: Chi square, t-test, linear and logistic regression analyses show differences between caregivers and non-caregivers related to gender, age, employment, and specific health outcomes.; Results: Of 3285 respondents, 18% self-identified as caregivers of children or adults with disabilities (n = 546). Almost one-third of all caregivers reported being diagnosed with depression or an anxiety disorder as compared to one-fifth of non-caregivers. Psychological distress was associated with an increased risk for a diagnosis of depression/anxiety. We also found that distress decreased with age when controlling for other factors.; Conclusion: This paper increases knowledge of a growing segment of family caregivers providing care for members with disabilities across the lifespan. Research and policy needs are discussed.

Access source material through DOI

Functional Support and Burden Among Out-of-Home Supporters of Heart Failure Patients With and Without Depression

Objective: Over 20% of patients with heart failure (HF) experience clinical depression, which is associated with higher rates of mortality, morbidity, and hospitalization. Support from family members or friends (whom we refer to as care partners [CPs]) can lower the risk of these outcomes. We examined whether HF patients with depression received assistance from CPs living outside of their homes. Further, we examined whether patient depression was associated with support-related strain among out-of-home CPs. Method: We analyzed baseline survey data from 348 HF patients with reduced ejection fraction and their CPs. Patients with scores on the Center for Epidemiological Studies Depression Scale–10 (Kohout, Berkman, Evans, & Cornoni-Huntley, 1993) of ≥10 were classified as having clinically significant depressive symptoms (i.e., depression). Outcomes included CP-reported hr per week helping with health care and talking with patients via telephone and scores on the Modified Caregiver Strain Index. Negative binomial regression models examined differences in the amount of in-person and telephone support for patients with and without depression, controlling for patients' comorbidities, living alone, CP geographic distance, and CP emotional closeness to the patient. Results: CPs provided more in-person support to HF patients with depression (M = 3.64 hr) compared with those without depression (M = 2.60 hr per week, incident rate ratio [IRR] = 1.40, p =.019). CPs provided more telephone support to patients with depression (M = 3.02 hr) compared with those without depression (M = 2.09 hr per week, IRR = 1.42, p <.001). Patient depression had no effect on caregiver burden (IRR = 1.00, p =.843). Conclusion: Patients with clinically significant depressive symptoms receive more in-person assistance and telephonic support from CPs. Despite that additional contact, caregiver burden was not greater among the supporters of depressed patients.

Access source material through DOI

Family Caregiver-Receiver Mutuality: A Concept Analysis

There are more than 43 million family caregivers in the United States. In studies of family caregivers and receivers, evidence suggests that family caregiver-receiver mutuality is linked to health. Lack of a clear definition of family caregiver-receiver mutuality is an obstacle that prevents scientific progress and effective operationalization of the concept. To address this issue, the authors applied Walker and Avant's method for concept analysis and clarified the concept of family caregiver-receiver mutuality. A standardized definition of caregiver-receiver mutuality is presented along with antecedents, consequences, defining attributes, empirical referents, and case illustrations.

Access source material through DOI

Exploring perceptions and practices of cancer care among caregivers and care recipients of breast cancer in India

Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad. 

Access source material through DOI

Experiences and support needs of informal caregivers of people with multimorbidity: a scoping literature review

Objective: Describe and synthesise existing published research on the experiences and support needs of informal caregivers of people with multimorbidity. Design: Scoping literature review. Primary database and secondary searches for qualitative and/or quantitative English-language research with an explicit focus on informal carers of people with multimorbidity (no date restrictions). Quality appraisal of included papers. Thematic analysis to identify key themes in the findings of included papers. Results: Thirty-four papers (reporting on 27 studies) were eligible for inclusion, the majority of which were rated good quality, and almost half of which were published from 2015 onwards. The review highlights common difficulties for informal carers of people with multiple chronic illnesses, including practical challenges related to managing multiple health care teams, appointments, medications and side effects, and psychosocial challenges including high levels of psychological symptomatology and reduced social connectedness. Current gaps in the literature include very few studies of interventions which may help support this caregiver group. Conclusion: Interest in this research area is burgeoning. Future work might fruitfully examine the potential benefits of audio-recorded health care consultations, and digitally delivered psychosocial interventions such as online peer support forums, for supporting and enhancing the caring activities and wellbeing of this caregiver group. 

Access source material through DOI

Do caregiver profiles predict the use of dementia care services? Findings from the Actifcare study

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised. 

Access source material through DOI

Development and validation of 'caring ability of family caregivers of patients with cancer scale (CAFCPCS)'

Aim: Family caregivers have limited abilities that make them vulnerable to the care needs of patients. Therefore, it seems necessary to evaluate their caring ability. The aim of this study was to design an instrument for assessing the caring ability of family caregivers of cancer patients.; Methods: This was a sequential exploratory mixed-method study, carried out in two qualitative and quantitative phases. The concept of caring ability and its dimensions were explained using conventional content analysis in the qualitative phase. The research participants included 41 family caregivers of cancer patients and professional caregivers who were selected using purposeful sampling method until reaching data saturation. The scale items were designed using the results of the qualitative phase of the study, as well as the review of relevant literature. In the quantitative phase, the scale was validated using content and face validity, construct validity, as well as internal consistency and stability.; Results: The primary item pool was prepared in 108 items. Content validity was determined using CVR with a cut-off point (0.62), CVI with a cut-off point (0.8) and kappa coefficient (κ) (>0.75). The validity of 72 items was confirmed. Then, the overlapping items were merged and eventually the 45-item scale entered the face validity stage and five items with an impact factor < 1.5 were omitted. Results of KMO = 0.904 and Bartlett = 6184.012 (p < 0.001) justified the need for factor analysis. Scree plot indicates five factors with eigenvalues above 1 and 67.7% of the total variance, including 'Effective role play, Fatigue and Surrender, Trust, Uncertainty, and Caring ignorance'. Reliability of the 31-item instrument indicated a Cronbach's alpha coefficient of 0.93 and ICC of 0.94.; Conclusions: Caring abilities scale (CAI) of family caregivers of patients with cancer is a valid and reliable instrument that can assess caregivers' caring ability.

Access source material through DOI

Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery, and Community Participation following Stroke. Part Two: Transitions and Community Participation Following Stroke

The sixth update of the Canadian Stroke Best Practice Recommendations for Transitions and Community Participation following Stroke is a comprehensive set of evidence-based guidelines addressing issues faced by people following an acute stroke event. Establishing a coordinated and seamless system of care that supports progress achieved during the initial recovery stages throughout the transition to the community is more essential than ever as the medical complexity of people with stroke is also on the rise. All members of the health-care team engaged with people with stroke, their families, and caregivers are responsible for partnerships and collaborations to ensure successful transitions and return to the community following stroke. These guidelines reinforce the growing and changing body of research evidence available to guide ongoing screening, assessment, and management of individuals following stroke as they move from one phase and stage of care to the next without "falling through the cracks." It also recognizes the growing role of family and informal caregivers in providing significant hours of support that disrupt their own lives and responsibilities and addresses their support and educational needs. According to Statistics Canada, in 2012, eight million Canadians provided care to family members or friends with a long-term health condition, disability, or problems associated with aging. These recommendations incorporate aspects that were previously in the rehabilitation module for the purposes of streamlining, and both modules should be reviewed in order to provide comprehensive care addressing recovery and community reintegration and participation. These recommendations cover topics related to support and education of people with stroke, families, and caregivers during transitions and community reintegration. They include interprofessional planning and communication, return to driving, vocational roles, leisure activities and relationships and sexuality, and transition to long-term care.

Access source material through DOI

Health literacy of caregivers of adult care recipients: A systematic scoping review

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

Access source material through DOI

Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project

Background: Providing informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. Objective: To explore the experiences and needs of the informal caregivers in four countries. Design: Qualitative research method was used in the study. Methods: The qualitative data was collected through focus groups and individual interviews between December 2016–May 2017. In all countries interviews were conducted in the mother language of the informants. Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. Results: Informal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. Conclusion: The important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases. 

Access source material through DOI

Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient

Objectives: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. Aim: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. Participants: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member’s pacemaker. Results: Four storylines that described, gave meaning to, and contextualized the caregivers’ experiences were identified: “I am done. I am not doing it anymore”; “Whatever you decide, I’ll support you”; “It is really difficult to watch, but you want to be there”; and “I will not have part of this.” Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. Conclusions: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians’ knowledge regarding caregivers’ experiences facing deactivation of a pacemaker, before and after the patient’s death. 

Access source material through DOI

“Just a Heads Up, My Father Has Alzheimer’s”: Changes in Communication and Identity of Adult Children of Parents with Alzheimer’s Disease

Alzheimer’s disease is the most common type of dementia, accounting for 60–80 percent of cases. The disease causes devastating impairment and often loss of cognitive and relational functioning for the individual and creates disorder and chaos for the family system. Even when not stepping into the formal role of caretaker, children of parents with Alzheimer’s disease experience increased vulnerability to physical and psychological illness, changes in family roles, and uncertainty about navigating a relationship with a parent they no longer know. In the present study, I sought to understand, through the lens of identity and identity-work, how adult children of parents with the disease perceived that their communication with and about the parent changed. Data from interviews with 12 adult children, none of whom were formal caregivers to their parents with the illness but all reported experiencing shifts in their identity and roles as a child of a parent with the disease, revealed four significant communication changes: communicating with a parent who was the same but different, communicating in multiple roles, correcting or reprimanding the parent, and managing parent’s private information. I discuss these findings, their implications, practical suggestions from the data, and suggested areas of future research.

Access source material through DOI

Words Matter: The Language of Family Caregiving

The authors discuss the vocabulary used to describe caregivers, They mention the role of family caregiving in geriatric care, how the use of the word "informal" to describe this caregiving is inadequate for the work that is done, and efforts to change how family caregivers are described.

Access source material through DOI

A Unifying Approach for Investigating and Understanding Youth's Help and Care for the Family

Youth provide significant contributions to their families, ranging from completing household chores to taking care of members of the family. Researchers have examined correlates, predictors, and consequences of the variation in youth's contributions to their families. One body of work has examined family assistance—youth's help with household chores. Another has looked at youth caregivers who provide significant, ongoing care to family members with health needs. This research has been disaggregated across various theoretical models, methods, and terms, making it difficult to investigate and understand the full spectrum of youth's contributions to the family. In this article, we summarize evidence about youth's help and care for the family across a fuller spectrum of behaviors and intensity, and review the challenges and strengths of myriad methods and conceptual models. We propose a unifying approach for investigating youth's contributions to the family that capitalizes on the strengths of each discipline and prioritizes interdisciplinary sharing of resources. 

Access source material through DOI

Supporting Active Aging for Persons with Severe Disabilities and Their Families Across the Life Course

Individuals with severe disabilities and their families can engage in person-centered and family-centered planning for aging using a life course view. Viewing aging within the context of the family and disability is essential because many people with severe disabilities depend on their families for supports in daily living, social relationships, and for activities within communities. Since eligibility-based supports are often limited, parents and other family members play large roles both financially and socially in helping their family member move through the life course into active and healthy aging. Charting the LifeCourse is a framework that both people with disabilities and their families can use to achieve desired life outcomes over time. Issues that impact active and healthy aging for people with disabilities include the aging of caregivers, death of a caregiver, limited resources for supporting physical and health concerns, staying active in the community following retirement, and maintaining social emotional connections.

Access source material through DOI

Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care

Purpose: The aim of the study was to identify areas of caregiver engagement in stroke care as viewed by stroke survivors and family caregivers.; Design: Interviews with stroke survivor/caregiver dyads (N = 71) from a population-based study of incident stroke.; Methods: We interviewed stroke survivors and caregivers about caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and caregiver reports and analyzed responses to open-ended questions.; Findings: Stroke survivor and caregiver reports of engagement were highly correlated (r = .89), although caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and caregivers agreed that caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms.; Conclusions: Stroke survivors and caregivers report significant and impactful caregiver engagement throughout the course of stroke.; Clinical Relevance: Clinicians may enhance stroke care by recognizing and facilitating caregiver efforts across all phases of stroke care.

Access source material through DOI

Secure Messaging with Physicians by Proxies for Patients with Diabetes: Findings from the ECLIPPSE Study

Background: Little is known about patients who have caregiver proxies communicate with healthcare providers via portal secure messaging (SM). Since proxy portal use is often informal (e.g., sharing patient accounts), novel methods are needed to estimate the prevalence of proxy-authored SMs.; Objective: (1) Develop an algorithm to identify proxy-authored SMs, (2) apply this algorithm to estimate predicted proxy SM (PPSM) prevalence among patients with diabetes, and (3) explore patient characteristics associated with having PPSMs.; Design: Retrospective cohort study.; Participants: We examined 9856 patients from Diabetes Study of Northern California (DISTANCE) who sent ≥ 1 English-language SM to their primary care physician between July 1, 2006, and Dec. 31, 2015.; Main Measures: Using computational linguistics, we developed ProxyID, an algorithm that identifies phrases frequently found in registered proxy SMs. ProxyID was validated against blinded expert categorization of proxy status among an SM sample, then applied to identify PPSM prevalence across patients. We examined patients' sociodemographic and clinical characteristics according to PPSM penetrance, "none" (0%), "low" (≥ 0-50%), and "high" (≥ 50-100%).; Key Results: Only 2.3% of patients had ≥ 1 registered proxy-authored SM. ProxyID demonstrated moderate agreement with expert classification (Κ = 0.58); 45.7% of patients had PPSMs (40.2% low and 5.5% high). Patients with high percent PPSMs were older than those with low percent and no PPSMs (66.5 vs 57.4 vs 56.2 years, p < 0.001) had higher rates of limited English proficiency (16.1% vs 3.2% vs 3.5%, p < 0.05), lower self-reported health literacy (3.83 vs 4.43 vs 4.44, p < 0.001), and more comorbidities (Charlson index 3.78 vs 2.35 vs 2.18, p < 0.001).; Conclusions: Among patients with diabetes, informal proxy SM use is more common than registered use and prevalent among socially and medically vulnerable patients. Future research should explore whether proxy portal use improves patient and/or caregiver outcomes and consider policies that integrate caregivers in portal communication.

Access source material through DOI

Rare health condition 27: Mayer-Rokitansky-Küster-Hauser syndrome; and the role of informal caregivers

The purpose of this series is to highlight a range of rare health conditions. Rare health conditions are those that affect no more and usually less than 1 person in every 2000 and many HCAs and nurses will encounter some of these conditions, given the high number of them. This 27th article will explore one of these conditions—Mayer-Rokitansky-KüsterHauser syndrome—and the role and support needs of the ‘informal’ family caregiver.

Access source material through DOI

Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol

Introduction: To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia's healthcare system. We will use those elements to develop a conceptual evaluation framework.; Methods and Analysis: This scoping review follows Arskey and O'Malley's methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team's collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework.; Ethics and Dissemination: We will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.;

Access source material through DOI

Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers

Background: Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. Objective: To document the current HD care experience and identify gaps in care provision in the United States. Methods: Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members. The surveys were disseminated via social media and patient advocacy partners from April-May 2017. Results: Total valid responses numbered 797, including 585 caregiver/family respondents and 212 PAHD responses. Respondents reported care provision from HD specialty centers, primary care, movement disorder clinics, and other settings. One in five respondents reported that the person with HD was not currently receiving medical or community care. Respondents generally reported a good level of care, with HD specialists providing the highest rated healthcare experience. Caregiver/family respondents reported helping with a range of activities including budget/finances (60.5%), housekeeping (57.1%) and daily help (53.2%). Most respondents (97.9%) reported searching online, including general information about HD (86.4%), using HD social media channels (61.3%) and looking up clinical trials (59.8%). Respondents emphasized a need for support in financial planning and accessing care, and also for more HD education in the medical community. Conclusions: There is need for more support for HD patients and families. People desire more credible, accessible information. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes. 

Access source material through DOI

A qualitative systematic review of factors affecting caregivers' decision-making for care setting placements for individuals with dementia

Aims: To synthesize factors that facilitates or hinders the choice of a new living environment for a person with dementia by the informal caregiver.; Background: In an effort to develop evidenced-based interventions to support caregivers, it is essential to explore their experience.; Design: A qualitative systematic review using thematic synthesis. Studies published up to July 2019 were retrieved from four electronic databases. Two independent reviewers selected studies and assessed their methodological quality.; Findings: Choosing a new living environment for a person with dementia includes two main concerns for caregivers: (1) evaluating the current living environment and caregiving arrangements; and (2) evaluating potential living environments. The key factor, that is acceptability, reflects the extent to which a change of living environment is personally and socially perceived as desirable, suitable, as well as decent for all stakeholders.; Conclusions: Future interventions must consider that caregivers' decision-making process is highly social and value-laden.

Access source material through DOI

The prevalence of young carers - a standardised survey amongst school students (KiFam-study)

Background: Children and adolescents who provide care, assistance or support for a chronically ill family member are called young carers. While there is a growing body of research about their specific situation, needs and impact of caring, only very few studies provide information on prevalence rates.; Objectives: The aim was to provide prevalence data for young carers in Germany, and to describe and quantify the nature and extent of their help.; Design: A cross-sectional study.; Settings: Data collection took place between 2016 and 2017 in 44 secondary schools (fifth to 13th grade) in North Rhine-Westphalia, Germany.; Participants: A total of 6313 students aged from 10 to 22 years participated in this study. They represent 0.5% of the basic population.; Methods: Based on the results of a preliminary qualitative study, a standardised electronic questionnaire was developed, which comprised four subject areas: socio-demographic information, general daily aids, health-related quality of life and chronic illness within the family. Statistical analyses included chi-square tests for nominal data and univariate analyses of variance for metrical data together with 95% confidence intervals.; Results: 19.6% (n = 1238) of all respondents state that someone in their family needs help due to a chronic illness. Nevertheless, not all of them are involved in caring activities. The prevalence of those defined as young carers in this study is 6.1% (n = 383), 64% are girls. They take on a wide range of activities. In addition to domestic work, they help their ill relatives with mobility, dressing and undressing, medication, feeding, personal hygiene and with intimate care.; Conclusions: The data provide a good insight into the situation of young carers. The prevalence rate is higher than expected. It refers to the social relevance of this topic and the need for further investigations.

Access source material through DOI

Perception of physical health by patients with severe mental illness and their family caregivers: A qualitative study

Purpose: The aim of this study is to determine the perceptions of both individuals with severe mental illness and their family caregivers regarding the physical health status of patients. Design and methods: A descriptive qualitative design was implemented, and 11 individuals with severe mental illness and 12 caregivers were analysed. Findings: Two main themes emerged as a result of the content analysis: a "physical health‐related barriers" theme and a "need for better physical health" theme. Practice implications: Patients and their family caregivers experience a number of barriers and difficulties related to maintaining and improving physical health. Psychiatric nurses should recognize these barriers and assist in empowering both patients and their family caregivers to overcome them.

Access source material through DOI

Patient and caregiver experience with delayed discharge from a hospital setting: A scoping review

Background: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital‐related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. Objective: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. Search strategy: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. Inclusion criteria: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer‐reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. Data extraction: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. Main results: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. Conclusion: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.

Access source material through DOI

Overcoming a Bad Day: a Qualitative Look into the Dementia Caregiving Experiences of Mexican-Origin Women in East Los Angeles

The number of Latinos with Alzheimer's disease (AD) is projected to more than double by 2030. Yet, the current literature is lagging on Alzheimer's caregiving among Latinos. This study explores how Mexican origin women experience dementia caregiving, and the coping strategies they use to manage their caregiving situations. Nine women were identified as caregivers of a family member with AD or dementia from a larger study on caregiving. Interviews with them were collected and subsequently analyzed using a modified grounded theory approach to reduce the data to identify thematic content. All but one participant described caregiving as "tiring," "wearing," or "hard." They reported suffering from stress, insomnia, nervousness, migraines, and/or depression because of their caregiving experiences. Participants engaged in various coping strategies to help combat the perceived negative consequences of their caregiving experiences. The most commonly reported strategies were various forms of distraction, and meditation or prayer. The Mexican origin women in this study experience faced two types of interpersonal challenges related to dementia caregiving: changes in the care receiver's personality and behaviors, and physical care needs. They engaged in various coping to strategies to address the difficulties of their situation. This study provides formative research for identifying research questions and topics of examination in the future. 

Access source material through DOI

A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations

Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.; Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).; Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.; Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.; Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.; International Registered Report Identifier (irrid): RR2-10.2196/resprot.4918

Access source material through DOI

A Linguistic Model of Communication Types in Palliative Medicine: Effects of Multidrug-Resistant Organisms Colonization or Infection and Isolation Measures in End of Life on Family Caregivers' Knowledge, Attitude, and Practices

Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life. Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted. Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories—turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states. Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.

Access source material through DOI

Informal caregivers' experiences of caring for persons with dementia in Estonia: A narrative study

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia.

Access source material through DOI

I becomes we, but where is me? The unity-division paradox when caring for a relative with dementia: A qualitative study

Background: The number of older people living with dementia is increasing. Admiral Nurses work with these individuals and their families in the UK to manage challenges associated with the condition, providing guidance, advice and reassurance, alongside practical solutions.; Aim: To explore the input of Admiral Nurses as part of people's journey to becoming and being a carer for someone with dementia.; Design: A qualitative study was conducted to describe and understand how Admiral Nurses are experienced and encountered by carers as part of their narrative around supporting a relative with dementia.; Methods: Semi-structured interviews were conducted with 19 carers between November 2017-April 2018. They lasted between 45 and 90 min. Thematic analysis was used to interpret data.; Findings: An overarching concept of "the unity-division paradox" was derived from the data. This highlights the complex interchange between the carer with (a) the person with dementia, (b) other individuals and (c) external services. Such interactions can make carers feel part of a larger network (unity) but also as if they are on their own, fighting on behalf of the person with dementia (division). This concept was underpinned by the following themes: (a) I becomes we; (b) My private world is encroached by dementia; (c) I'm left navigating an unwieldy system; (d) Are you with or against us?; and (e) Recreating boundaries to rediscover me.; Conclusion: The identity and unique characteristics and interests of those caring for a person with dementia may be lost as they encounter tensions associated with the unity-division paradox. Admiral Nurses can help carers feel less alone in managing internal and external struggles by supporting them to do their best for a loved one with dementia.; Implications For Practice: Understanding carers' experience and supporting their work may help to increase and sustain their capacity to provide care.

Access source material through DOI

'The Future is Probably Now': Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

Background: Earlier end‐of‐life communication is critical for people with heart failure given the uncertainty and high‐risk of mortality in illness. Despite this, end‐of‐life communication is uncommon in heart failure. Left unaddressed, lack of end‐of‐life discussions can lead to discordant care at the end of life. Objective: This study explores patients' and caregivers' understanding of illness, experiences of uncertainty, and perceptions of end‐of‐life discussions in advanced illness. Design: Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi‐structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. Main results: Understanding of illness was shaped by participants' illness‐related experiences (e.g. symptoms, hospitalizations and self‐care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants' inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end‐of‐life discussions. Conclusion: Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness‐related challenges may delay older adults and family caregivers from engaging in end‐of‐life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end‐of‐life communication.

Access source material through DOI

Family experience in providing support and the achieving of post-stroke late adulthood development

Objectives: Supporting the achievement of post-stroke late adulthood development is a unique experience that impacts heavily on families. The purpose of this study was to provide an overview of family experience in providing support post-stroke to a family member and enabling them to achieve late adulthood development and then to interpret this.; Method: The research used a qualitative design with a descriptive phenomenology approach. The participants were 14 caregivers of the elderly.; Results: The results (1) the impact of the bio-psycho-socio-spiritual on the elderly post-stroke survivor, (2) how the family fulfills the needs of the post-stroke elderly person, (3) the impact of the post-stroke period on the elderly by family members, (4) the achievement of post-stroke late adulthood development by family members, and (5) the meaning of providing care for the post-stroke elderly survivor.; Conclusions: This research identified 5 themes and recommendations are that psychoeducation for the carers of stroke survivors should be improved.

Access source material through DOI

Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.

Access source material through DOI

Family Caregiving and Cancer Pain Management

Family caregivers are centrally involved in cancer pain management, especially for patients with advanced disease. This issue is becoming ever more important as care shifts to the outpatient setting and home care and as the aging population creates more patients who have multiple illnesses and family caregivers who often live with serious illnesses. This narrative review evaluated current knowledge and literature regarding family caregivers' involvement in cancer pain management and identified areas for future research and clinical practice. There is a need for additional research in this area and for clinical models of support for family caregivers as they provide pain management for patients with cancer.

Access source material through DOI

Experiencing the care of a family member with Crohn's disease: a qualitative study

Objectives: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.; Design: A qualitative study based on a phenomenological approach was conducted through in-depth interviews.; Setting: Participants living in Alicante (Spain) were recruited Participants: Eleven family caregivers of people with CD were interviewed.; Methods: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.; Results: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.; Conclusion: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

Access source material through DOI

Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies

Objectives: To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.; Design: Systematic integrated review without meta-analysis.; Data Sources: A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018.; Eligibility Criteria For Selecting Studies: Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies).; Results: Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress.; Conclusion: Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions.; Prospero Registration Number: CRD42018096590.

Access source material through DOI

The experiences of family members witnessing the diminishing drinking of a dying relative: An adapted meta-narrative literature review

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life. Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research. Design: An adapted meta-narrative review approach. Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument. Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals. Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative.

Access source material through DOI

The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol

Aim: This study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers. Design: This is an exploratory qualitative study. Methods: Participants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1 year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21 years of age, assuming the role as primary caregivers of a pneumoconiosis patient will also be invited to join. In‐depth interviews will be conducted in patients' home separately for patients and their caregivers and a home environment assessment will also be undertaken. The interview data will be transcribed verbatim, managed with the software NVivo 11 and analysed with content analysis. The ethical approval has obtained, and this study is supported by a research grant from the Pneumoconiosis Compensation Fund Board of Hong Kong on 14 August 2018. Discussion: This study will advance the knowledge on how pneumoconiosis patients and their family caregivers manage the disease in the family context. The findings of this study can inform the development of a family‐oriented care model to support the pneumoconiosis patients and their family caregivers to manage this condition better. Impact Statement: Pneumoconiosis is the most common type of occupational lung disease in the Chinese population. These patients require long‐term comprehensive services and support to assist their disease self‐management. However, little is known about how these patients and their family caregivers manage the disease in the family context. The current study addresses this gap by exploring patients' illness experience and their family members' caregiving experience, which is timely to inform the design of family‐oriented model of care to support this clinical cohort. Clinical Trial Registration: This study has been registered at ClinicalTrials.gov (NCT04022902). 

Access source material through DOI

Differences within Differences: Gender Inequalities in Caregiving Intensity Vary by Race and Ethnicity in Informal Caregivers

Among the 50+ million informal caregivers in the US, substantial gender, racial/ethnic, and socioeconomic disparities in caregiving intensity are well-documented. However, those disparities may be more nuanced: gender disparities in caregiving intensity may vary by race/ethnicity (White, Black, and Hispanic) and socioeconomic status (SES). We used data from the 2011 National Study of Caregiving and applied generalized linear models to estimate associations between three measures of caregiver intensity (ADLs, IADLs, and hours caregiving/month) and the three sociodemographic factors with their interaction terms. Black female caregivers provided significantly higher levels of care than White females and males for both IADL caregiving and hours/month spent caregiving. Black caregivers spent an average of 28.5 more hours/month (95%CI 1.7-45.2) caregiving than White caregivers. These findings highlight the need to understand the complex disparities within population subgroups and how intersections between gender, race/ethnicity, and SES can be used to develop effective policies to reduce disparities and improve caregiver quality-of-life. 

Access source material through DOI

Correlation between Supportive Care Needs of Women with Breast Cancer and Quality of Life of their Family Caregivers

Background: Breast Cancer is highly prevalent among women. The supportive care needs of such patients not only affect their quality of life (QoL) but also that of their family caregivers. The present study aimed to assess the correlation between the supportive care needs of women with breast cancer and the QoL of their family caregivers.; Methods: The present cross-sectional study was conducted from September 2017 to June 2018. The target populations were breast cancer patients (N=150) and their primary family caregivers (N=150) who attended the Omid Chemotherapy and Radiotherapy Center affiliated with Hormozgan University of Medical Sciences, Bandar Abbas, Iran. Data collection tools included a demographic information form, the Supportive Care Needs Survey-Short Form 34, and the Caregiver Quality of Life Index-Cancer Scale. The data were analyzed using SPSS software (version 22.0) with descriptive statistics and Pearson's correlation coefficient. P<0.05 was considered statistically significant.; Results: The mean age of the patients was 45.76±10.44 years. Of the family caregivers, 99 (66%) were the patients' spouses. Of the different dimensions of the supportive care needs, the score for the physical needs (40.60±23.50) was the highest. In terms of the QoL of the family caregivers, mental and emotional burden scored the highest (20.19±7.38). There was a significant correlation between the caregivers' mental and emotional burden and the physical needs of the patients (r=0.19, P=0.02).; Conclusion: The result of the present study showed that physical needs were the most common supportive care needs of patients with breast cancer. Such needs also significantly undermined the QoL of the caregivers in terms of emotional burden and financial concerns.

Access source material through DOI

Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective

Background: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. Method: Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. Results: The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. Conclusions: Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.

Access source material through DOI

Constructing Normalcy in Dementia Care: Carers' Perceptions of Their Roles and the Supports They Need

Background and Objectives: People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care.; Research Design and Methods: We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development.; Results: "Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.

Access source material through DOI

Caring for People With Young Onset Dementia: An Interpretative Phenomenological Analysis of Family Caregivers' Experiences

People with young onset dementia (YOD) experience many unique challenges. Similarly, family caregivers experience changing personal, familial, and societal roles. However, YOD is under recognized and under resourced with a lack of dedicated models of care. The current study explored family members' experience of caregiving for persons with YOD to identify barriers and opportunities to accessing support. Qualitative interviews were conducted with six family caregivers, using interpretative phenomenological analysis. Findings show that caregivers experience significant uncertainty within their role, difficulty accessing timely diagnosis, and face unclear care pathways and age-related restrictions to accessing support. These findings also reflect elements of ambiguous loss and anticipatory grief: caregivers experienced sudden changes to relationships and family structure, along with the anticipation of a changed future. Optimum models of care should target timely diagnosis and clear post-diagnosis pathways and services that are flexible, relevant, and accessible. Services should offer psychosocial support for family members as they adjust to their new role as caregivers.

Access source material through DOI

Caring for migrant older Moroccans with dementia in Belgium as a complex and dynamic transnational network of informal and professional care: A qualitative study

Background: Due to its labour migration history, Belgium is confronted with an increasingly older population of people of Moroccan background who have been diagnosed with dementia. These migrants came to the country during the labour migration wave of the nineteen-sixties and seventies to work in mines and other industries and they are now ageing. Yet little is known about how dementia care is provided to this older population.; Objectives: This study explores how dementia care is provided to these Moroccan older people with dementia, and what challenges do caregivers face in providing care.; Methods: A qualitative study including 31 informal caregivers of older Moroccan migrants with dementia and professional caregivers in the field of dementia care in several Belgian cities was conducted. After an initial focus group including 6 informal and professional caregivers, individual in-depth interviews were held with 12 informal caregivers of Moroccan decent and 13 professional caregivers. In order to be included in the study, informal caregivers had to have a recent experience in caring for an older family member with dementia. The professional caregivers had to be active in the field of dementia care (General Practitioners, nurses, psychologists,…) and have experience with older migrants with dementia.; Results: Analyses of the collected data reveal that current dementia care is a challenging, complex and dynamic search process. This process is shaped by (1) multiple factors reflecting the changing care needs of the care recipient during the course of the dementia, (2) the individual (transnational) recourses of the informal caregivers and the (3) current (lack of) accessibility of professional dementia care (driven by the absence of an accessible migration-, culture- and religion-sensitive professional care). The limited professional service-use is predominantly compensated through the search for transnational external helpers. The limited migration, cultural and religious sensitivity of current dementia care is often overlooked by professional caregivers.; Conclusion: The study provides a better understanding of the complex reality of dementia care for older migrants in which these different aspects intersect. This understanding enable health professionals and policy makers to develop a better suited care for older migrants with dementia.

Access source material through DOI

Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study

Objective: To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs.; Methods: Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need.; Results: Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0-2 ADLs and 5-7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03).; Conclusion: Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development.

Access source material through DOI

Advance care planning for people with dementia: Ordinary everyday conversations

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia. An exploratory qualitative study of 23 people who had been carers or provided support for a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, 'ordinary everyday conversations', describes how informal conversations and discussions within the family relating to preferences at the end of life had been embedded in interactions within the families over years. Sub-themes revealed three important components enabling adherence to the prior wishes of the person with dementia through these conversations: knowing the person and belief in 'doing the right thing'; the importance of Wills and Enduring Power of Attorney; and negotiating unexpected encounters. There is potential for families to be well prepared for the time when they may need to make decisions for the person with dementia based on ordinary everyday conversation that take place within families and throughout life. This study also suggests that more innovative approaches to making a Will may provide an important vehicle for expressing advanced care wishes.

Access source material through DOI

59 Male Family Carers' Perceptions of Formal Support Services, a Meta-ethnography

Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers' experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare's (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men's experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers' experience to develop more inclusive supports and consequently increase service uptake

Access source material through DOI

Silent voices: Family caregivers' narratives of involvement in palliative care

Aim To explore how family caregivers experience involvement in palliative care. Design A qualitative design with a narrative approach was used. Methods Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017. Results We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. Conclusion The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.

Access source material through DOI

Struggling for a dignifying care: experiences of being next of kin to patients in home health care

Background Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. Aim The aim of this study was to explore next of kin's views of dignity in home healthcare services. Methods This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016. Results Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost. Conclusions This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition.

Access source material through DOI

A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

Access source material through DOI

Non-spouse companions accompanying older adults to medical visits: a qualitative analysis

Background Medical Visit Companions (MVCs) are encouraged for older adults' routine medical encounters. Little data exist on the experiences and contributions of non-spouse companions for the growing population of older adults without a living spouse. Methods We conducted six focus groups with forty non-spouse MVCs identified through churches in Baltimore, Maryland. Thematic analysis was used to identify key issues before the visit, during the visit itself, after the visit, and in the overall companion experience. Results MVCs described their experiences positively but also highlighted many challenges related to the role that extended far beyond the visit itself. These included scheduling, transportation, communication, and coordination of care expectations. Conclusion Our increasingly complex healthcare system can be challenging for older adults to navigate successfully. The diverse nature of tasks performed by companions in this study highlight the many benefits of having a companion accompany older patients to medical visits. The positive experience of the companions studied and their willingness to continue their role in the future highlights the untapped potential for increased social facilitation to improve the quality of healthcare visits and achieve patient-centered care for all older patients.

Access source material through DOI

Family carers' experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis

Objectives Few studies have captured the experiences of family carers who manage the nutritional needs of family members living with dementia at home. The identification and management of symptoms that may affect nutritional status is often reliant upon the family carer. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of the family members who support them. Method Semi-structured interviews were conducted between October 2017 and February 2018. Participants were also asked to keep a diary of experiences for two weeks before the interview. An Interpretative Phenomenological Analysis approach was used throughout. Findings: Eight participants, with a mean age of 69.6 years residing in South West England were recruited and represented a range of familial roles. Following analysis, three superordinate themes were identified: 'becoming carer and cook', 'changing role and relationships' and 'emotional eating'. Conclusion Family carers make food and drink decisions daily, and feel a duty to take on the responsibility for food shopping and cooking. They are conscious about 'doing the right thing' when it comes to providing nutritional care, and some feel uncertain about the food choices they are making, particularly regarding a reliance on convenience foods. Changes in appetite, food preferences and mealtime habits related to dementia can lead to disruption affecting the dyad. It is important that family carers and people living at home with dementia are provided with adequate support regarding identifying nutritional risks, making appropriate food and drink choices and preventing the risk of malnutrition in the dyad.

Access source material through DOI

Contextual factors influencing medication management by rural informal caregivers of older adults

Background: Managing medications is an important part of the rural informal caregiver's role in the community setting, and the context within which care is provided plays an important role in shaping the work they perform. However, little is known about the intra- and interpersonal factors that impact the rural caregiver's involvement in and performance of medication management. Objectives: To identify contextual factors influencing medication management by rural informal caregivers of older adults. Methods: Four separate focus groups with rural caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and problems they encountered while providing assistance. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach. Results: Care recipient independence, or their ability and preference to perform medication-related activities without supervision, was a key factor driving the caregiver's involvement in medication management and how it was performed. Many caregivers used a team-based approach to medication management that supported the care recipient's independence. Care recipient health and function was a driver behind the need for caregiving, and declines in physical and mental health led to changes in how medication management was carried out over time. Caregiver location also impacted the ways in which medication management was performed by caregivers. Conclusions: Interventions and pharmacy services to support medication management by rural informal caregivers should be designed in a way that preserves and promotes the care recipient's independence, and should be tailored to the context within which caregiving is performed.

Access source material through DOI

Addressing cancer patient and caregiver role transitions during home hospice nursing care

Objective Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. Method A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. Result Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. Significance of results Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Access source material through DOI

Hassles with medication management perceived by caregivers of adults who have intellectual or developmental disabilities

Background Medication management is undertaken by caregivers of people who have intellectual or developmental disabilities. Objective The objectives were to measure the medication management hassles reported by caregivers of adults who have intellectual or developmental disabilities and to describe associations between characteristics of caregivers, medication regimens, and the person with intellectual or developmental disability and the scale score. Setting Web-based survey conducted in the United States. Method A newsletter announcement with a link to the survey was sent to members of a disability advocacy organization. Caregivers were age 18 years and older who manage medications for adults with intellectual or developmental disabilities. The survey questions were used to obtain characteristics of the caregiver, the medication regimen they managed, and the care-recipient. The study was approved by the Institutional Review Board of Michigan Medicine (HUM00091002). Main outcome measure The Family Caregiver Medication Administration Hassles Scale (caregiver scale). Results Forty-two caregivers responded, with 41 being female with a mean age of 56.7 years. The mean caregiver scale score was 28.9 (possible range 0-120). Highest scores (greatest hassles) were significantly associated with a greater level of support required by the care-recipient, stronger caregiver beliefs of the necessity of medication and concern about using medications, lack of previous caregiver health-care training, and being an employed caregiver rather than family member. Conclusion Medication management can contribute to caregiver stress. Pharmacists should ensure that caregivers are counseled about medication that they manage, be accessible for questions, and examine medication regimens to reduce polypharmacy and complexity of regimens.

Access source material through DOI

Family Caregiver Factors Associated With Emergency Department Utilization Among Community-Living Older Adults With Disabilities

Background: Older adults with disability are frequent users of the emergency department (ED) and often rely on family caregiver support. We identify whether and which caregiver characteristics are associated with older adults' ED use. Methods: We use Cox proportional hazards regression to model the likelihood of all-cause ED use (defined as 1 or more visits within 12 months of survey) as a function of caregiver characteristics after adjusting for older adult sociodemographic and health characteristics. We draw from linked older adult and caregiver surveys and administrative claims, creating a sample of 2521 community-living older adults with mobility/self-care disability receiving care from a family or unpaid caregiver. Results: About half (52.5%) of older adults receiving mobility or self-care help incurred 1 or more ED visits within 12 months of interview. Adjusting for year of data collection, sociodemographic characteristics, and health status, these older adults were at greater risk of all-cause ED use if their primary caregiver provided greater than 40 hours of care per week (hazard ratio [HR] 1.22, 95% CI 1.04-1.43; P = .02), helped with health care tasks (HR 1.26; 95% CI 1.08-1.46; P < .01), or experienced physical strain (HR 1.18; 95% CI 1.03-1.36; P = .02). Conclusion: Caregiver strain, helping with health care tasks, and greater hours of help per week are associated with heightened risk of ED use among older adults receiving mobility or self-care help. Study findings suggest the potential benefit of caregiver assessment and support.

Access source material through DOI

Older Adult Factors Associated With Identified Need for Family Caregiver Assistance During Home Health Care

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.

Access source material through DOI

Care in dementia: Informal caregiver motivations

Introduction: The progression of dementia and the clinical situation severity can determine the intensity and the frequency of care. Informal caregivers (IC) often experience overload and motional stress by caring for a person with dementia (PWD), and this contributes to negative consequences on psychosocial health and increased risk of mortality. Objectives: The aim of this study is to describe the profile and motivations of informal caregivers of people with dementia. Methods: We developed a descriptive-exploratory study with a mixed approach. The research scenario was the Health Centre Groups (ACES) of the Northern Zone of Portugal and its respective Family Health Units (USF) and Community Care Unit (UCC). Results: From the sample studied, it was observed that ICs are predominantly female (72.2%), with ages varying between 34 and 88 years (x = 61.43; ± 11.75). The relationship with PWD is mainly a parent son relationship (46.7%) followed by the spouse (40%) with lower expression for the siblings (2.2%). The main motivations that led family members to become caregivers were categorized into four themes: i) Emotional reasons (love, affection, marriage, commitment); ii) Duty and responsibility; iii) Proximity and availability; and iv) Feeling of pain (charity). Regarding the main motivations for caregivers, we found a greater expressiveness for both the spouses (69.5%) and the sons or daughters (58.5%) for emotional reasons. Conclusions: Therefore, even if caregivers feel motivated to take care of their family member, care strategies should be developed to help the informal caregivers to minimize stress, overload, depression and anxiety arising from this task, maximizing coping strategies and empowerment. As health care responsibilities and burdens continue to be transferred to the family and other caregivers, there is an urgent need for family-friendly policies, practices and interventions.

Access source material through DOI

Will I care? The likelihood of being a carer in adult life

The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.

Original source (some source materials require subscription or permission to access)

Community and caregiver perceptions of giving care to seniors

Background: Family caregivers of seniors and disabled adults frequently bear the responsibility of aiding in instrumental activities of daily living and locating resources, often while raising their own families. As the demand for care rises, caregivers may experience declining physical health and increased social and emotional stress compared to their noncaregiving counterparts. This study aims to better understand the journey of unpaid family caregivers and identify opportunities for improvement across organizations, policies, systems, and teams. Research design and methods: A purposive sample of 28 current and former unpaid caregivers of seniors or people with disabilities (26 females and 2 males) participated in four separate focus groups. Recordings were transcribed verbatim and analyzed using open coding. Results: Six major themes surrounding the experience of caregiving emerged from the coding process: Ambivalence, “Boiling Point,” Coping, Acknowledgment and Acceptance, Family Dynamics, and Interaction with the System. Focus groups indicated an urgent need to identify and support unpaid caregivers earlier in their trajectory of caring for a senior and to provide consistent, right-time resources over the trajectory of the senior’s lifespan. Discussion and implications: The rational, emotional, and relational components of caregiving represent distinct but overlapping themes within the experience of giving care. Each theme influences another, creating an experience that is complex, fluid, and sensitive to change. The system surrounding caregivers must proactively identify caregivers as equal members of the care team for a senior or disabled adult early in the patient’s disease trajectory.

Access source material through DOI

Comparing the Barriers and Facilitators of Heart Failure Management as Perceived by Patients, Caregivers, and Clinical Providers

Background: Heart failure (HF) management requires the participation of patients, their significant others, and clinical providers. Each group may face barriers to HF management that may be unique or may overlap. Objective: The aim of this study was to compare the barriers and facilitators of HF management as perceived by patients, significant others, and clinical providers. Methods: Participants were recruited from a Veterans Health Administration facility. Eligible patients had a diagnosis of HF (ICD9 code 428.XX), 1 or more HF-related visit in the previous year, and a significant other who was their primary caregiver. Significant others were adults with no history of cognitive impairments caring for patients with HF. Providers were eligible if they cared for patients with HF. All participants completed semistructured interviews designed to elicit barriers to managing HF and strategies that they used to overcome these barriers. Interviews were transcribed and analyzed using latent thematic analysis, and recruitment continued until thematic saturation was attained. Results: A total of 17 couples and 12 providers were recruited. All 3 groups identified poor communication as a key barrier to HF management, including communication between patients and their significant other, between couples and providers, and providers with each other. Significant others noted that the lack of direct communication with clinical providers hindered their efforts to care for the patient. All 3 groups emphasized the importance of family members in optimizing adherence to HF self-management recommendations. Conclusions: Providers, patients, and significant others all play important and distinct roles in the management of HF. Tools to enhance communication and collaboration for all 3 and supporting the needs of significant others are missing components of current HF care.

Access source material through DOI

Exploring caregivers' perspectives on improving care for older people at the end of life in Thailand

Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide. Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage. Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis. Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully. Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.

Access source material through DOI

How do people with dementia and family carers value dementia-specific quality of life states? An explorative “Think Aloud” study

Objective: To investigate the decision-making processes applied by people with dementia and family carers participating in using health economic approaches to value dementia-specific quality of life states. Methods: People with dementia (n = 13) and family carers (n = 14) participated in valuing quality of life states using two health economic approaches: Discrete Choice Experiment (DCE) and Best Worst Scaling (BWS). Participants were encouraged to explain their reasoning using a “Think Aloud” approach. Results: People with dementia and family carers adopted a range of decision-making strategies including “anchoring” the presented states against current quality of life, or simplifying the decision-making by focusing on the sub-set of attributes deemed most important. Overall, there was strong evidence of task engagement for BWS and DCE. Conclusions: Health economic valuation approaches can be successfully applied with people with dementia and family carers. These data can inform the assessment of benefits from their perspectives for incorporation within economic evaluation.

Access source material through DOI

Family caregivers experiences of the pre-diagnostic stage in frontotemporal dementia

Frontotemporal dementia (FTD) is a neurodegenerative disease with symptoms that differs from other dementias. Commonly early symptoms in FTD are changes in personality and behavior, which can be interpreted as psychiatric disease. The delay in FTD diagnosis contributes to the burden of family caregivers. Therefore, it is important to have more knowledge about the pre-diagnostic stage. In this qualitative interview study, we explored fourteen family caregiver's experiences of the pre-diagnostic stage of frontotemporal dementia (FTD). Our findings suggest that the family caregivers experienced the pre-diagnostic stage of FTD as changes in the interpersonal relationship with their loved one. These changes were often subtle and difficult for family caregivers to explain to others. The findings from our study illuminate the importance of medical staff paying attention when a next of kin is concerned about subtle changes in a loved one. The findings also illuminate that awareness of FTD should be raised. 

Access source material through DOI

Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study

Objective: The aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL). Methods: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL. Results: Lower well-being was associated with low caregiving competence (–13.77; 95% confidence interval [CI]:–16.67, –10.87), perceiving fewer positive aspects of caregiving (–7.67; 95% CI:–10.26, –5.07), high caregiving stress (–24.45; 95% CI:–26.94, –21.96), and high role captivity (–15.61; 95% CI:–18.33, –12.89). Lower SwL was associated with low caregiving competence (–4.61; 95% CI:–5.57, –3.66), perceiving fewer positive aspects of caregiving (–3.09; 95% CI:–3.94, –2.25), high caregiving stress (–7.88; 95% CI:–8.71, –7.06), and high role captivity (–6.41; 95% CI:–7.27, –5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL. Conclusion: Both positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL. 

Access source material through DOI

Family caregivers for cancer patients

Non formal, especially family caregivers are the most vital support for cancer patients in their healing process. However, caregivers are the least known, informed, and researched of all groups of people surrounding cancer patients. Ten family members are individually interviewed on their phenomenal experience in caring for cancer patients. Common themes that emerged from the interviews include financial, social emotions, and physical challenges. Financial problems rooted from unemployment as caregivers have to spent time looking after their sick family members. Social emotional problems included perception from society on their unemployment and family relationship issues. Caregivers also experienced physical strains as they put aside their well being in caring for others. However, caregivers have their own coping skills which included positive outlook and family support. Understanding of caregivers experiences is important for mental health professionals, medical team attending to the patients, and the public at large. Results of this study suggests further assistance and guidance for caregivers in carrying their responsibilities.

Access source material through DOI

The Experiences of Family Caregivers at the End of Life: Suffering, Compassion Satisfaction and Support of Health Care Professionals: Experiences of Caregivers at the End of Life

A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver's suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

Access source material through DOI

Experiences of family care during breast cancer: the perspective of caregivers

OBJECTIVE: To describe the experience of family care to women with breast cancer during treatment from the perspective of caregivers in the Mexican context. METHOD: Qualitative phenomenological study. In-depth interviews were conducted with caregivers of women who survived breast cancer. Participants were selected by intentional, cumulative and sequential sampling. A conventional content analysis was performed. RESULTS: Participation of seven caregivers, who reported their positive and negative experiences when assuming their role as informal caregivers in the family context. On the strength of the reciprocity of care and its reward, prevailed critical moments, negative feelings, and lack of support resources during the experience. This enables the understanding of the informal care bond in order to enhance it with coping strategies and specific guidance from the nursing staff. CONCLUSION: Participants experienced a transformation in their identity as caregivers and by being aware of their experience, they could describe their qualities, which increased their coping strategies with the disease and the care challenges.

Access source material through DOI

“I’m Trying to Stop Things Before They Happen”: Carers’ Contributions to Patient Safety in Hospitals

Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care–associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood—especially from the carers’ perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals. Results demonstrated carers engaged in the process of “patient-safety caring.” Patient-safety caring included three levels of intensity: low (“contributing without concern”), moderate (“being proactive about safety”), and high (“wrestling for control”). Carers who engaged at high intensity provided the patient with greater protection, but typically experienced negative consequences for themselves. Carers’ experiences of negative consequences from safety involvement need to be mitigated by practice approaches that value their contributions.

Access source material through DOI

Rise Above: Experiences of Spirituality Among Family Caregivers Caring for Their Dying Family Member in a Hospice Setting in Pakistan

Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God's kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God's blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.

Access source material through DOI

Insights into the system of care of the elderly with mental disorders from the perspective of informal caregivers in Lithuania

Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced. 

Access source material through DOI

Opting Out of a Time-of-Death Visit: Insights From Home Hospice Family Members

Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family's experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver's previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines. 

Access source material through DOI

Caregivers of individuals with schizophrenia: Who are they and what are their challenges?

Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia. 

Access source material through DOI

Why and how family caregivers should participate in shared decision making in mental health

Patient involvement (shared decision making ) and caregiver involvement (family involvement, etc.) are mostly seen as different aspects of care, and efforts to integrate them are limited. This Open Forum posits that both approaches are critical and that caregiver involvement should always be considered during shared decision making, potentially as an integral component. The authors argue that the two approaches can overlap and work synergistically rather than antagonistically. When caregiver involvement is integrated into shared decision making, caregivers may assume any of a variety of roles and need to develop certain competencies to better engage in decision making.

Access source material through DOI

Dementia and patient safety in the community: a qualitative study of family carers' protective practices and implications for services

BACKGROUND: Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients' homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community. METHODS: This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants' experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis. RESULTS: The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs. CONCLUSIONS: When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers.

Access source material through DOI

The dynamics of social care and employment in mid-life

This study investigates the relationship between the provision of informal care to older parents/parents-in-law and the employment status of adult children in mid-life. The study analyses unique panel data for a cohort of individuals born in 1958 in Britain, focusing on respondents at risk of providing care (i.e. with at least one surviving parent/parent-in-law) and in employment at 50. Logistic regression is used to investigate the impact of caring at 50 and 55 on employment status at 55, controlling for socio-demographic characteristics, the respondent's health status and their partner's employment status. Separate models examine (a) the likelihood of exiting the labour force versus continuing work, and (b) amongst those continuing in work, the likelihood of reducing hours of employment. Different types of care (personal, basic and instrumental support) are distinguished, along with hours of caring. The results highlight that providing care for more personal tasks, and for a higher number of hours, are associated with exiting employment for both men and women carers. In contrast, the negative impact of more intense care-giving on reducing working hours was significant only for men - suggesting that women may juggle intensive care commitments alongside work or leave work altogether. Facilitating women and men to combine paid work and parental care in mid-life will be increasingly important in the context of rising longevity. 

Access source material through DOI

Family caregivers and decision-making for older people with dementia

This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual’s autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual. Based on data from interviews with family caregivers living at home, decision-making through family caregivers is discussed and formal guardianship is also considered. Swedish legislation leaves individuals with dementia and family caregivers in a vacuum between self-determination and full autonomy with the ideal of citizenship emphasised and recognised in the Social Services Act on the one hand, and on the other, a strong need for support in everyday life and with decision-making. 

Access source material through DOI

“Did I make the right decision?”: The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014. Five themes were identified: becoming the only – or main – surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support – or not – from family members. An overarching construct tying the themes together is the description of the participants’ experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.

Access source material through DOI

What Does Death Preparedness Mean for Family Caregivers of Persons With Dementia?

Purpose: The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning. Methods: Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness. Results: Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, “a silver-lining”; and (7) closing, reconciling, and renewing relationship bonds and completing the family member’s life. Discussion: This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway. 

Access source material through DOI

The Invisibility of a Family Caregiver

During the past five years, I have had the opportunity to meet and hear from many people who felt invisible. These individuals are among the 40 million family caregivers in the United States who are providing unpaid care to a parent, spouse, partner, friend or neighbor.

Original source (some source materials require subscription or permission to access)

Remembering Sleep: Sleep Deprivation and Symptom Management at Home

Carter focuses on sleep deprivation and symptom management at home. Family caregivers provide increasingly complex care at home to family members and friends with cancer. Care that was once provided in the hospital by skilled, highly educated, and often advanced certified oncology nurses is now being provided in the home by family caregivers who are most often not in possession of these skill sets. With the advancement of therapies and delivery methods such as oral therapies and outpatient infusions, cancer care has moved out of the hospital and into the community. A unique contribution of nursing science to the understanding of human experiences is that we holistically evaluate biopsychosocial contributors to those experiences.

Access source material through DOI

Relationship and communication characteristics associated with agreement between heart failure patients and their Carepartners on patient depressive symptoms

Objectives: Informal caregivers who recognize patients’ depressive symptoms can better support self-care and encourage patients to seek treatment. We examined patient-caregiver agreement among patients with heart failure (HF). Our objectives were to (1) identify distinct groups of HF patients and their out-of-home informal caregivers (CarePartners) based on their relationship and communication characteristics, and (2) compare how these groups agree on the patients’ depressive symptoms. Method: We used baseline data from a comparative effectiveness trial of a self-care support program for veterans with HF treated in outpatient clinics from 2009-2012. We used a cross-sectional design and latent class analysis (LCA) approach to identify distinct groups of patient-CarePartner dyads (n = 201) based on relationship and communication characteristics then evaluated agreement on patients’ depressive symptoms within these groups. Results: The LCA analysis identified four groups: Collaborative (n = 102 dyads, 51%), Avoidant (n = 33 dyads, 16%), Distant (n = 35 dyads, 17%), and Antagonistic (n = 31 dyads, 15%). Dyadic agreement on the patients’ depressive symptoms was highest in the Distant (Kappa (κ) = 0.44, r = 0.39) and Collaborative groups (κ = 0.19, r = 0.32), and relatively poor in the Avoidant (κ = –0.20, r = 0.17) and Antagonistic (κ =–0.01, r = 0.004) groups. Patients in Avoidant (61%) and Antagonistic groups (74%) more frequently had depression based on self-report than patients in Collaborative (46%) and Distant (34%) groups. Conclusion: Caregiver relationships in HF tend to be either Collaborative, Avoidant, Distant, or Antagonistic. Patients’ depressive symptoms may negatively affect how they communicate with their caregivers. At the same time, improved patient-caregiver communication could enhance dyadic consensus about the patient’s depressive symptoms.

Access source material through DOI

In Their Own Words: Experiences of Caregivers of Adults With Cancer as Expressed on Social Media

PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015. FINDINGS: Major categories identified in caregivers' online journals included patient health information, cancer awareness/advocacy, social support, caregiver burden, daily living, emotions (positive and negative), and spirituality. IMPLICATIONS FOR NURSING: Nurses often recommend using social media as a communication strategy for patients with cancer and their caregivers. The findings from this study provide potential guidance nurses may wish to offer caregivers. For example, nurses may talk with caregivers about how and what to post regarding treatment decisions. In addition, nurses can provide support for caregivers struggling with when and how often to communicate on social media.

Access source material through DOI

Optimizing Participation of Older Adults with Cognitive Deficits Post-stroke: Types of Help and Caregiver Burden

This longitudinal mixed-method study examined the types of help provided by caregivers to optimize participation of older adults with cognitive deficits post-stroke (care recipients), and how these types of help varied with caregiver's burden. Twelve family caregivers of care recipients post-stroke completed a burden questionnaire and semi-structured interviews one month, three months, and six months following care recipient's discharge home from acute care, rehabilitation, or day hospital. Care recipients completed cognitive tests and a social participation questionnaire. Types of help caregivers provided differed according to the amount of daily living support, degree of concern for care recipient's well-being, and impact on caregivers' social life. Interestingly, types of help fostering care recipient's social participation, self-esteem, and abilities were unrelated to a negative impact on caregivers' social life. Understanding how different types of help relate to caregiver burden could improve the types of help to optimize care recipients' social participation without overburdening caregivers

Access source material through DOI

Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.

Access source material through DOI

"He was no longer listening to me": A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS

In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives' perspective. We apply Tronto's care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and "caring about" into "caring for". This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to "care-giving" was characterised by physical acts of providing care for their relative, which lasted until death. Tronto's conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members' caring evolves from "caring about", to "caring for", and eventually to "giving care" to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services. 

Access source material through DOI

Critical comments mediate the association between carer distress and psychological symptoms in persons recently diagnosed with dementia

Introduction: Carers of persons with dementia (PWD) experience high levels of burden and distress and may use criticism in an attempt to change the behavior of PWD and thereby reduce their distress. We hypothesized that carer distress and criticism would each have an impact on the psychological well-being of the PWD and examined whether criticism mediates the association between carer distress and PWD psychological well-being.; Methods: We recruited 61 persons with a recent diagnosis of dementia and their carer via U.K. dementia services and assessed at 2 time points 6 months apart. Carers completed questionnaire measures of burden and distress. We coded critical comments from a Camberwell Family Interview. PWD completed questionnaire measures of quality of life, depression, and anxiety. We conducted correlation, regression, and mediation analyses to explore the relationship between carer variables and PWD psychological outcomes and whether criticism mediated any relationship found.; Results: Carer distress, carer critical comments, and PWD anxiety and depression at 6-month follow-up were all significantly correlated. Baseline carer distress predicted poorer quality of life in PWD at 6-month follow-up. The number of carer critical comments significantly (p < .01) mediated the effect of carer distress on PWD quality of life.; Discussion: Interventions addressing carer burden and distress and offering coping strategies to help them to reduce criticism of the PWD would improve the quality of life of those affected by dementia. 

Access source material through DOI

The experience of patients and family caregivers during hospital-at-home in France

Background: Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient's home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH. Methods: The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals' HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory. Results: HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH's organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself. Conclusion: HAH strongly involved the patient's caregiver(s) all along the process. HAH's development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home. 

Access source material through DOI

Informal carers' experiences and feelings during rehabilitation

The purpose of this study was to explore the experiences and feelings of people caring for patients with long-term diseases in a rehabilitation centre. A qualitative research approach was used. Fifteen informal carers were interviewed. The study was conducted in a rehabilitation centre in Greece. Three themes emerged. The first was feelings regarding the patient and the carers themselves, as well as the type of care provided and life at home after discharge from the rehabilitation unit. The second was experiences regarding health professionals and delivered care, and other carers. The third theme was expectations and thoughts about the future. Health professionals should plan and implement support interventions within rehabilitation settings in order to address carers' needs in terms of practical guidance not only within the framework of patient care but also relating to the psychological and physical wellbeing of informal carers.

Access source material through DOI

Measuring triadic decision making in older patients with multiple chronic conditions: Observer OPTION

Objective: To develop a valid and reliable tool to measure triadic decision making between older adults with multiple chronic conditions (MCC), their informal caregivers and geriatricians. Methods: Video observational study with cross-sectional assessment of interaction during medical consultations between geriatricians (n = 10), patients (n = 108) and informal caregivers (68) by three calibrated raters at the geriatric outpatient department of two Dutch hospitals. The Observer OPTIONMCC instrument was developed, based on the 'Dynamic model of SDM in frail older patients' and the 'Observing Patient Involvement in Decision Making - 5 item scale' (Observer OPTION-5). Results: Factor analysis confirms that it is acceptable to regard the new scale as a single construct. The 7-item single factor solution explained 62.76% of the variability for geriatricians, 61.60% of the variability for patients and 54.32% of the variability for informal caregivers. The inter-rater ICC for the total Observer OPTIONMCC score was .96, .96, and .95 (resp. geriatricians, patients, informal caregivers), with values ranging from .60 to .95 for individual items, showing good levels of agreement. Conclusion and Practice Implications: We conclude that Observer OPTIONMCC is sufficiently valid and reliable to be used for the assessment of triadic SDM in populations of older patients with MCC.

Access source material through DOI

Female Family Caregivers' Experiences During Nursing Home Admission: A Phenomenological Qualitative Study

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decisionmaking process.

Access source material through DOI

Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

Access source material through DOI

The agency of patients and carers in medical care and self-care technologies for interacting with doctors

People living with Parkinson's disease engage in self-care for most of the time but, two or three times a year, they meet with doctors to re-evaluate the condition and adjust treatment. Patients and (informal) carers participate actively in these encounters, but their engagement might change as new patientcentred technologies are integrated into healthcare infrastructures. Drawing on a qualitative study that used observations and interviews to investigate consultations, and digital ethnography to understand interactions in an online community, we describe how patients and carers living with Parkinson's participate in the diagnosis and treatment decisions, engage in discussions to learn about certain topics, and address inappropriate medication. We contrast their engagement with a review of self-care technologies that support interactions with doctors, to investigate how these artefacts may influence the agency of patients and carers. Finally, we discuss design ideas for improving the participation of patients and carers in technology-mediated scenarios. 

Access source material through DOI

Australian mental health caregiver burden: a smallest space analysis

Objectives: To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden.; Design: Cross-sectional survey.; Setting: All Australian States and Territories.; Participants: Responses were received from 231 Australian mental health caregivers.; Main Outcome Measures: The Involvement Evaluation Questionnaire was used to assess caregiver burden.; Results: Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving.; Conclusion: Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.

Access source material through DOI

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads

Background and Objectives Persons with dementia (PWDs) often place greater importance on their care values (i.e. maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g. care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. Design and Methods Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. Results Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. Implications Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education. 

Access source material through DOI

How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer?

Objective: To explore how caregivers are involved in making treatment decisions for older people living with dementia and a new diagnosis of cancer. Method: A systematic review of PubMed, CINAHL, PsycINFO, Web of Science, and Scopus databases was conducted. Studies recruiting formal or informal caregivers for older people with dementia and a diagnosis of cancer were considered for inclusion. Results: Of 1761 articles screened, 36 full texts were assessed for eligibility, and six were included in the review. This review has identified that health care professionals (HCPs) are often unaware of the coexistence or severity of dementia in cancer patients, and therefore fail to properly address care needs as a result. While caregivers are relied on to help make decisions, they have unmet information needs and feel excluded from decision-making. Conclusion: Treatment decision making in the context of older adults with dementia and a new diagnosis of cancer needs further research. This will help HCPs to understand their needs and improve the experience of decision making for both caregivers and the people that they care for. 

Access source material through DOI

Hispanic Dementia Family Caregiver's Knowledge, Experience, and Awareness of Self-Management: Foundations for Health Information Technology Interventions

Purpose: As a first step toward developing a web-based Family-Health Information Management System intervention, we explored Hispanic dementia family caregiver's knowledge, use, and awareness of self-management principles and skills to address health and health care needs for themselves and the person with dementia (PWD). Method: Twenty caregivers and 11 caregiver counselors attended an English or Spanish language focus group ranging from 4 to 6 participants. We conducted a directed content analysis informed by Lorig and Holman's conceptualization of self-management. Results: A complement of six skills (i.e., problem solving, decision making, resource utilization, patient–provider partnership, action planning, and self-tailoring) to achieve one of three tasks (i.e., emotional, medical, and role management) can fully represent Hispanic dementia family caregivers' ability to self-manage health and health care needs. While not prominent in our study, caregivers and caregiver counselors pointed out existing and potential uses of personal consumer technology to schedule reminders and search for resources. Discussion: A broad conceptualization of self-management may be necessary to understand Hispanic dementia family caregiver's ability and needs to address emotional, medical, and role challenges of caregiving. Conclusions: These findings and advances in the use of consumer health information technology support the development of self-management caregiver interventions.

Access source material through DOI

Rural Dementia Caregivers in Southwest Texas: An Exploratory Study of Advance Directives and End-of-Life Proxy Decision Making

For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.

Access source material through DOI

Actions to influence the care network of home-dwelling elderly people: A qualitative study

Positive impact of care networks of home-dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants-elderly people, informal caregivers or formal care providers-to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross-sectional qualitative study of 48 interviews with home-dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network-based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.

Access source material through DOI

Characteristics and Difficulties of Informal Caregivers in Assisting Elderly People

Objective: This study aims to identify the informal caregivers' difficulties in assisting the elderly patients of the Programa Saúde da Família [Family Health Program] in Bambuí city, Minas Gerais State, Brazil. Methods: This is a transversal research, approved by the Certificado de Apresentação para Apreciação Ética (CAAE) [Certificate of Presentation for Ethical Appreciation] No. 0146.0.213.000-11. Seventy elderly people and their informal caregivers were interviewed and the collected data were analyzed. Results: The treatment of cognitive disorders in the elderly (32.9%) and the lack of knowledge about the health care delivered (20%) were the main difficulties stated by the caregivers. These results also showed a bivariate relationship with "difficulty during care": the caregivers who stated that they slept less (≤ 6 hours/night) (%), "did not have a caregiver course" (%) and did not have "leisure activity" (%); regression: individuals who affirmed that they had not completed a course for caregivers of the elderly. Conclusion: It was settled that actions aiming to support the informal caregiver in face of the numerous difficulties faced in the care of the elderly are essential.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A responsibility that never rests - the life situation of a family caregiver to an older person

Background: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life. Aim: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. Methods: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. Findings: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. Conclusion: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Access source material through DOI

The art of maintaining everyday life: collaboration among older parents, their adult children, and health care professionals in reablement

Background: A shift in the work-divide among generations and an ageing population have altered the balance of care and support between families and welfare states. Although state policy has increasingly acknowledged that older adults ageing in place receive support from family members, how adult children perceive their collaboration with their parents and health care professionals in reablement services remains unclear. The aim of this study is to identify how adult children perceive the collaboration between older parents, family members, and health care professionals in reablement services. Methods: This study has a qualitative research design with a constructivist grounded theory approach. In total, 15 adult children - 6 sons, 8 daughters, and a daughter-in-law, aged 47-64 years - whose parents had received reablement services, participated in in-depth interviews. Results: Our findings clarify how children and their older parents' reablement services can collaborate to support how the adult children manage and maintain both their own and their parents' everyday lives. The core category derived from our data analysis was the art of maintaining everyday life, with four subcategories indicating the different dimensions of that process: doing what is best for one's parents, negotiating the dilemmas of everyday life, managing parents' reablement, and ensuring the flow of everyday life. Conclusion: To promote collaboration among older adults, their children, and health care professionals in reablement, health care professionals need to proactively involve older adults' family members in the reablement processes, particularly because older adults and their children do not always express all of their care-related needs to reablement services. 

Access source material through DOI

Dyadic Decision-Making in Advanced Parkinson's Disease: A Mixed Methods Study

People with advanced Parkinson's disease (PD) are living at home being cared for by a family member. Decisions about health care and living preferences are made in a family context. The aims of the study were to (a) examine the types and timing of the decisions being made by dyads (person with Parkinson's [PWP] and caregiver) in advanced PD; and (b) explore perceived decision quality relative to specific decisions made. A mixed methods design of semi-structured dyad interviews followed by individual completion of decision measures twice at six months apart was utilized. Decisions involved obtaining more services in the home, moving into assisted living communities, maintaining as is, and initiating hospice. There was high decision quality as reflected by low decisional conflict and regret without statistical differences within the dyad. The findings provide insight into the nature of decisions dyads face and suggest ways that health care providers can support decision-making.

Access source material through DOI

State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

Original source (some source materials require subscription or permission to access)

The caregiving phenomenon and caregiver participation in dementia

Background: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads’ needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost‐effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.

Access source material through DOI

The use of carer perspectives and expert consensus to define key components of a biopsychosocial support intervention for stroke carers

Objective: To identify the key components of a biopsychosocial support intervention to improve mental wellbeing for informal stroke carers within the first year post-stroke based on the combined perspectives of experts in the field of psychological care after stroke and informal stroke carers themselves. Methods: After reviewing the existing literature a cross-sectional mixed-methods design was adopted comprising 1) focus groups with informal stroke carers about their psychological support needs, and 2) nominal group technique with academic and clinical stroke care experts to reach consensus on intervention priorities. Transcripts were thematically analyzed and combined with the ranked priorities from the nominal group to identify key components for intervention content. Results: Key themes for informal stroke carers were associated with: 1) changes in relationships, roles, and dynamics; 2) emotional impact and acceptance; 3) drawing on inner resources; 4) looking for information, solutions, and explanations; 5) support from others. The expert nominal group placed priority on eight ranked areas: 1) acknowledging "normal" emotions; 2) education about the effects of a stroke; 3) reactions to loss and adjustment; 4) recognizing signs and symptoms of not coping; 5) knowing how and when to access practical and emotional support; 6) strategies for taking care of own health; 7) dealing with difficult emotions; and 8) problem solving skills. Conclusions: Themes from the informal carer focus groups, and ranked priority areas will inform the development of a biopsychosocial support intervention for stroke carers to be tested in a feasibility randomized controlled trial.

Access source material through DOI

The Role of Sexual Disinhibition to Predict Caregiver Burden and Desire to Institutionalize Among Family Dementia Caregivers

Neuropsychiatric symptoms in dementia are associated with greater caregiver burden and desire to institutionalize, though previous work largely examines the cumulative effects of many behavioral symptoms. Sexual disinhibition could be particularly stressful due to stigma attached to these behaviors. Links between care recipient sexual disinhibition, caregiver burden, and caregiver desire to institutionalize were examined by analyzing cross-sectional data from 730 family caregivers recruited online. Caregiver burden, caregiver desire to institutionalize, and neuropsychiatric symptoms, including sexual disinhibition, were assessed via caregiver report. Burden (P < .001) and desire to institutionalize (P = .008) were greater among caregivers who endorsed sexual disinhibition. Sexual disinhibition uniquely predicted desire to institutionalize after accounting for presence (P = .02) and severity (P = .03) of other neuropsychiatric symptoms. A similar pattern was seen for burden (presence P < .04; severity P = .06), and follow-up analyses revealed caregiver burden mediated the relationship between care recipient sexual disinhibition and caregiver desire to institutionalize (presence bias-corrected 95% confidence intervals [BCa 95% CI] [0.003, 0.08], severity BCa 95% CI [0.007, 0.06]). Sexual disinhibition appears to be a particularly difficult neuropsychiatric symptom for the family caregiver, contributing to desire to institutionalize via caregiver burden.

Access source material through DOI

Community Treatment Orders and Supported Decision-Making

This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.

Access source material through DOI

Family caregiver-reported outcomes regarding decision-making for left ventricular assist device implantation

Family caregivers (FCGs) often participate in the decision for their loved one to receive a left ventricular assist device (LVAD). Little is known about the contribution of FCGs to this complex decision. To investigate family caregiver-reported outcomes related to decision-making for LVAD implantation and their experiences post-implantation. Descriptive thematic analysis was used to analyze longitudinal data. Thematic saturation was achieved. Three key themes emerged from the data. The main theme in the pre-implantation period was: Not a decision. The two themes in the post-implantation period were: More satisfaction than regret and Unanticipated situational change. Family caregiver-reported outcomes inform clinical practice and future research. FCGs of LVAD recipients did not see viable alternatives to LVAD implantation, were generally satisfied with post-implantation outcomes, and experienced unexpected life changes in the post-implantation period despite feeling prepared preoperatively. Education of both LVAD recipients and their FCGs must be optimized.

Access source material through DOI

“This is our life now. Our new normal”: A qualitative study of the unmet needs of carers of stroke survivors

Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.

Access source material through DOI

Informal health care: examining the role of women and challenges faced as caregivers in rural and urban settings in Ghana

Objective: Globally, the informal health sector is continuing to experience increasing growth despite the parallel development of the formal health care sector over the years. However, studies in Ghana concerning caregiving are limited since little attention has been given to the informal health care sector. This study therefore explores the role of women as caregivers and the challenges they face in the Kumasi Metropolis and Ejisu Juaben Municipality in Ashanti Region of Ghana. Methods: In-depth interviews were conducted with 20 caregivers from the two study areas. Data were analyzed and presented based on a content and thematic analysis approach. Results: Findings from the study showed that caregivers perform key roles including those of a domestic, health care, economic, social and spiritual nature. However, caregivers were confronted with many challenges, including inadequate funds, inability to work effectively, prolonged stress, limited time for socialization and emotional trauma. Conclusion: For caregivers to perform their roles efficiently and effectively, government and health care authorities must provide them with immediate financial support and training. Also, in the near future policy makers should put a comprehensive policy in place to bolster caregiving in general.

Access source material through DOI

Male working carers: a qualitative analysis of males involved in caring alongside full-time paid work

Given ageing demographics, the need for carers will increase and studies suggest that men are nearly as likely as women to become carers. The purpose of this study is to understand the specific challenges that male working carers experience with regard to social life and paid work. Participant recruitment was conducted through local carer support groups and male-dominated workplaces. Using a semi-structured format, 15 interviews were conducted. Findings suggest a variety of themes, including caring characteristics, the effects of caring, support systems and coping strategies. Our results indicate that the male working carer population faces specific challenges in the workplace and social settings.

Access source material through DOI

Life course trajectories of family care

More than 30 years ago, Elder theorised multiple life-course trajectories in domains such as family and work, punctuated by transitions that create the structure and rhythm of individual lives. We argue that in the context of population ageing, family care should be added as a life-course domain. We conceptualise life courses of family care with core elements of 'care as doing' and 'care as being in relationship', creating hypothetical family care trajectories to illustrate the diversity of life-course patterns of care. The framework provides a basis for considering influences of care on cumulative advantage/disadvantage for family carers.

Access source material through DOI

Engaging the person with young-onset dementia: working in partnership to support meaningful activity

Imelda cared for her husband through his journey with young-onset Alzheimer's disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

Access source material through DOI

Perceived reliability of assistance among American older adults: a study of kin and non-kin help

As a neglected dimension of the quality of care, assessments of caregiver reliability by older adults receiving help contributes to the better understanding of unmet needs for assistance in everyday life. This study examines how the numbers and composition of helpers - both potential and actual - relate to older Americans' reports of the reliability of assistance. According to the 2008 US National Elder Mistreatment Study (<i>n</i> = 2,176), the potential network, proxied by marital status and household size, was not a significant predictor of unreliable care, nor was the actual number of caregivers. We distinguish four types of helping sources: kin-only; exclusively informal non-kin (eg friends, neighbours); exclusively formal (paid); and mixed type. There was a higher risk of unreliable care among respondents relying exclusively on informal non-kin assistance compared with exclusively kin help. Kin-only provided more reliable care than informal non-kin but were no more reliable than formal or mixed types.

Access source material through DOI

'From my point of view, my wife has recovered': A qualitative investigation of caregivers' perceptions of recovery and peer support services for people with bipolar disorder in a Chinese community

Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover.; Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services.; Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis.; Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified.; Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.;

Access source material through DOI

The Hidden Health Crisis: What Family Caregivers Want You to Know

I looked at the diagnostic specialist and burst into tears. She had seen other women like me and knew what was wrong with my shoulder. Finally, after 14 months of being tossed between physicians, specialists, and physical therapists and many misdiagnoses, I had an answer: frozen shoulder. It explained the extreme pain in my shoulder along with the stiffness and inability to move the shoulder joint. This condition takes 1 to 3 years to resolve, and there is little that can be done to relieve the pain or force the shoulder to move. 

  1. MaryAnne’s Story

  2. The Caregiving Journey

  3. Stories From the Front Lines

  4. The Hidden Health Crisis

 
 
Original source (some source materials require subscription or permission to access)

CE: Original Research: New Acute Symptoms in Older Adults with Cognitive Impairment: What Should Family Caregivers Do?

The authors assessed the frequency with which family caregivers of older veterans with cognitive impairment sought guidance for new physical or behavioral symptoms and described the characteristics of such events, including the diagnoses and advice given. Background: When older adults with cognitive impairment develop new physical or behavioral symptoms, their family caregivers face a difficult decision: whether and when to seek professional medical care. Most family caregivers lack formal training in assessment and may have difficulty making such decisions. The Veterans Health Administration's home-based primary care (HBPC) program, which is widely available, offers community-dwelling frail veterans and their family caregivers guidance, with the goal of reducing hospitalization and institutionalization in long-term care facilities. Objective: This study sought to assess the frequency with which family caregivers of cognitively impaired older adults sought prehospital guidance from health care professionals when that resource was available to them, and to describe the characteristics of such events. Methods: This study used a retrospective chart review of patients who were enrolled in the Orlando Veterans Affairs Medical Center HBPC program for at least one month between October 1, 2013, and September 30, 2014; had a diagnosis indicative of cognitive impairment (Alzheimer's disease, vascular dementia, or mild cognitive impairment); had a dedicated family caregiver; and were not enrolled in hospice care. Data were collected from data collection templates and nurses' narrative notes. Univariate descriptive analyses were conducted regarding the type of staff contacted by family caregivers, the presenting diagnoses, the guidance offered by staff, and the number of unplanned acute care encounters. Results: Among the 215 patients studied, there were 254 unplanned acute care encounters (including ED visits followed by discharge to home and ED visits resulting in hospital admission). Family caregivers sought guidance from a health care professional 22% of the time before such an encounter. The presenting clinical issues were most often new problems (43%) that included falls, feeding tube problems, fever, new pain, rash or other skin problems, and unexplained edema. Overall, 25% of all unplanned acute care encounters were for reasons considered potentially avoidable. About half of the patients who were subsequently hospitalized had symptoms of delirium, indicating that their illness had significantly advanced before presentation. Conclusions: It's important for health care professionals to ensure that family caregivers of cognitively impaired older adults can access professional guidance readily when facing decisions about a loved one's care, especially when there is an acute onset of new symptoms. Teaching caregivers how to recognize such symptoms early in order to prevent exacerbations of chronic illness and subsequent hospitalization should be a high priority. Our findings underscore the need to do so, so that caregivers can best use the resources that HBPC programs have (or ought to have) in place, in particular 24/7 guidance and decision assistance.

Access source material through DOI

Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS: An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION: Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. 

Access source material through DOI

Using photo-elicitation to explore the lived experience of informal caregivers of individuals living with dementia

Objectives: This study aims to explore the subjective lived experience of informal caregivers supporting an individual with dementia.; Design: This study uses the interpretive phenomenological approach utilizing the method of photo-elicitation and in-depth semi-structured interviews.; Methods: Six individuals were given a disposable camera to capture photographs which they felt illustrated their own lived experiences of being a caregiver of an individual living with dementia. Photographs were printed and used to form discussion within an in-depth semi-structured interview. The photographs provided an innovative way of capturing the lived experiences of formal dementia caregivers and allowed the interview data to be grounded in their daily living, centring around their own lived experiences.; Results: Three themes emerged from data analysis: 'conceptualising the role of informal caregiver', 'support for the informal caregiver', and 'the caregivers own needs'.; Conclusions: Findings demonstrated the complexity of the relationship between the caregiver and the person living with dementia, and the shift in this relationship specifically due to the role of carer, with notable differences between spousal caregivers and adult-child caregivers. The importance of social, emotional, and practical support for caregivers was highlighted, as well as significance of the caregiver's individual needs. Statement of contribution What is already known on this subject? Informal caregivers of individuals living with dementia cover much of the associated health care costs. Informal caregiving of individuals living with dementia can lead to negative health outcomes of the carer. Health outcomes of informal caregivers living with dementia are grounded in culture and are influenced by multiple factors. What does this study add? The complexity of the transition from family member to informal caregiver has both a physical and emotional impact on caregivers. The transition, and experiences of informal caregiving, is dependent on the relationship to the individual living with dementia. Caregiver support and recognizing the caregiver's individual needs were imperative to caregiver well-being.

Access source material through DOI

The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis

Background: Family caregivers play a key role in the lives of patients with multiple myeloma. However, very little is known about the impact that the disease (its diagnosis, course and prognosis) has on the main family caregiver.; Aim: To achieve a deeper understanding of the lived experience of individuals who are the primary caregiver of a relative with multiple myeloma and to shed light on their needs.; Design: Interpretative phenomenological study.; Setting and Participants: A total of 12 individuals who were the main family caregivers of a relative with multiple myeloma who was under outpatient follow-up at a cancer unit in Barcelona were recruited via purposive sampling until data saturation was reached. In semi-structured in-depth interviews, participants described their experiences of caring for their relative with multiple myeloma. Interviews were recorded, transcribed and analysed using ATLAS.ti v7.2. The seven steps proposed by Colaizzi were used for data analysis, and the relationships among emerging themes were examined.; Findings: Four main themes emerged: (a) a new life, adapting to the disease, (b) commitment to the patient, (c) the emotional sphere and (d) experiences in relation to the care and support received. The analysis also revealed a core overarching theme: uncertainty.; Conclusion: Primary family caregivers experienced intense uncertainty, and they described a strong need to air their feelings. Specific practical initiatives, targeting both health-related and logistical aspects of care, need to be developed in order to support family caregivers of myeloma patients.

Access source material through DOI

The Role and Influence of Prostate Cancer Caregivers Across the Care Continuum

Background: Black men endure a disproportionate burden of morbidity and mortality related to prostate cancer (CaP). Increasingly family members are assuming the role of providing care and support to family members with chronic disease. Understanding the role and influence of the caregiver is a necessary part of developing resources to assist individuals learning to provide care.; Aim: The analysis aimed to explore CaP survivors' perceptions of the role and influence of family caregivers to better understand existing opportunities for improving experiences and outcomes for both the caregiver and the care receiver.; Design: Secondary analysis of qualitative interview transcripts. Data were analyzed to explore new inquiries related to CaP survivors' perceptions of family caregivers' role and influence at each stage of care. Content analysis was used to group data into established categories.; Data Source: Data included qualitative interview transcripts with 32 CaP survivors from the Florida Prostate Cancer Care and Survivorship Project.; Results: The role of the family caregiver is complex. Caregivers in this community seem to have a significant influence on behavior modification and cues to action for Black men with prostate cancer. According to the men in this group, caregivers functioned as normalizing agents, coordinating care and creating a new normal, throughout the various stages of care and survivorship.; Conclusions: Findings inform areas for future research to develop culturally tailored health promotion programs designed to improve outcomes and address the needs of both the family caregiver and the care receiver across the care continuum.

Access source material through DOI

Patient and carer experience of blended diet via gastrostomy: a qualitative study

Background: Home enteral feeding is becoming increasingly prevalent within the UK. The use of commercial prescription formula is considered best practice; however, increasingly, patients are choosing to use blended diet via gastrostomy. There is anecdotal evidence suggesting both physical and social benefits, although there are concerns regarding the safety and efficacy of this method of feeding. The present study explores the experiences of patients who are currently using or have used this method of feeding in the past. Methods: Patients currently using or having previously used blended diet via gastrostomy were identified. Patients and their carers, where applicable, were invited to participate in a semi‐structured interview. The data were transcribed and themes were identified. Results: Thematic analysis of the data collected showed that patients had an overall positive experience of blended diet with few or no identified disadvantages. Participants reported improvements in gastrointestinal symptoms, as well as general wellbeing, in addition to the social benefits of their family member being included in family mealtimes. Reference was made to the lack of support for this method of feeding and the desire for blended diet to be offered as an alternative to commercial enteral feed. Conclusions: This research highlights the benefits of blended diet via gastrostomy as an alternative to commercial formula. More research is needed to develop evidence‐based guidelines for patients and the healthcare professionals supporting them.

Access source material through DOI

Family matters! - The caregivers' perspective of Mental Healthcare Act 2017

Mental health continues to fight for acceptance in health care all over the world. The need for a separate act for mental illnesses proves this fact even more. The very nature of the mental illness has necessitated legislation to aid the service providers and service users. The Mental Healthcare Act 2017 has taken great initiatives in terms of protection of human rights for people with mental illness such as the inclusion of mental illness in health insurance, stress on informed consent, decriminalization of suicide, and introduction of advance directives (ADs) and punishment to those who violate the law. However, in a country like India where the family as a unit has more significance than personal autonomy, the new act emphasizes the patient's rights and, in doing so, may make the doctors more defensive and fearful in making clinical decisions, thus shifting the burden to the shoulders of the family members. There is a need for suitable amendments to include the family's concerns as well; otherwise, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics. Qualitative studies are required from the family's perspective to illustrate the hindrances that the patients' families are facing. In the context of Indian family structure and dynamics and working in the Indian community, we feel that without suitable amendments to include the family's concerns, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics.

Access source material through DOI

Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease

Background: Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled.; Methods: We conducted a survey with 151 elderly (aged ≥65) chronic kidney disease patients and their caregivers at outpatient renal clinics. The survey asked, when making treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented a series of choice vignettes for managing patient's condition and asked respondents to choose between two hypothetical treatment profiles in each vignette. Patients and caregivers were first interviewed separately in tandem, and then were brought together to choose a treatment jointly for vignettes where the initial treatment choice differed within the dyad. We used multivariate regressions to investigate the predictors of discordance and reconciliation.; Results: We found that most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the hypothetical vignettes, caregivers chose the more intensive option (i.e., dialysis) more than patients did (26% vs 19%; p < 0.01). Overall, 44% of the dyads had discordance in at least 3 vignettes, and the odds of discordance within patient-caregiver dyads was higher when caregivers chose dialysis or treatment with the higher cost (p < 0.01). In half the cases, discordance resolved in the patients' favor, and this was more likely to be the case if the patient was employed and wanted to be in charge of final decisions (p < 0.01).; Conclusions: Our results highlight the important role of caregivers in decision-making but also the potential for them to overstep. Clinicians should be aware of this challenge and identify strategies that minimize the chances that patients may receive treatments not consistent with their preferences.

Access source material through DOI

Roles of Family Caregivers and Perceived Burden When Caring for Hospitalized Adult Cancer Patients: Perspective From a Low-Income Country

Background: Family caregivers (FCGs) of adult cancer patients (ACPs) are typically involved in the entire trajectory of cancer disease, from diagnosis to survivorship or end of life. In developing countries, FCGs are more intensely involved in the process of providing care to the hospitalized ACPs because of lack of adequate cancer care resources. Active performance of tasks to meet the needs of ACPs in the hospital setting is likely to elicit significant caregiver burden.; Objective: The aim of this study was to explore the tasks performed and the caregiver burden experienced by FCGs of hospitalized ACPs in a sub-Saharan country.; Methods: A cross-sectional descriptive design was used to collect data from 168 FCGs of ACPs. The Caregiver Burden Scale was used to measure burden.; Results: The most common cancer diagnosis in male and female ACPs was Kaposi's sarcoma (32.1%) and breast cancer (37.9%), respectively. The tasks regularly performed by most FCGs for the ACPs were providing emotional support (79.8%), feeding (68.5%), transporting to other appointments (62.5%), preparing meals (55%), and giving medications (46.4%). Most FCGs (75%) were experiencing severe or very severe general caregiver burden. The dimensions of caregiver burden that were most severely impacted were general strain (70.6%), disappointment (85.8%), and isolation (72%). Predictors of caregiver burden are reported.; Conclusion: Family caregivers of hospitalized ACPs experience severe caregiver burden. The main forms of burden experienced were general strain, disappointment, and isolation.; Implications For Practice: Cancer care services in developing countries should be strengthened with services that address FCGs' emotional needs and human resources to curtail the strain imposed on FCGs.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Access source material through DOI

Family Caregivers, AIDS Narratives, and the Semiotics of the Bedside in Colm Tóibín's The Blackwater Lightship

This article examines the ways in which Colm Tóibín's The Blackwater Lightship carefully negotiates media discourses on HIV/AIDS and the genre of the AIDS narrative in order to shed new light on the physical and emotional experience of being a family caregiver. The novel elevates the otherwise mundane bed to the status of a symbol that reflects a myriad of unspoken social relations and shows how the daily life of the caregiver challenges their ideals, stretches emotional limits, and heightens interdependency. In reading the complex semiotics of the bedside in the novel, this article reveals the emotional costs of illness. In place of the biomedical focus on cellular decay and tissue damage, interactions at the bedside foreground the social realm of plans abandoned and abilities impaired. As The Blackwater Lightship reveals, bedsides are both real and imagined places of intimacy, care, and connection that are nevertheless fraught and weighted with meaning; they are the site of the complex emotional commitments that bind caregivers and patients together and provide spaces for intimacy, vulnerability, and reflection.

Access source material through DOI

Impacts of regulatory processes on the experiences of carers of people in LGBTQ communities living with mental illness or experiencing a mental health crisis

This article presents the findings of exploratory research on the mental health and community services experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis. The aim of the research is to explore the experiences of carers in relation to provisions for carers and people from LGBTIQ communities in the mental health legislation, policy and practice standards in the state of Victoria in Australia. Data were collected from online surveys and in-depth interviews and analysed according to the alignment of the stated intent of these documents and the actual experiences of carers.

Access source material through DOI

Caring for patients with oral cancer in Taiwan: The challenges faced by family caregivers

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers' primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face-to-face, semi-structured and tape-recorded interviews to collect data and employed qualitative content analysis to elicit caregiving-related themes. Six task-related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers' ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.

Access source material through DOI

Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong

The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.

Access source material through DOI

Finding fault: Criticism as a care management strategy and its impact on outcomes for dementia caregivers

Background: Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. Methods: Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized.  Results: On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β = 0.26, P < 0.001) and frustration with caregiving (β = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β = 0.14, P < 0.05) and social services (β = 0.15, P < 0.05), but not health care services. Conclusion: Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.

Access source material through DOI

Challenges to and Strategies for Formal Service Utilization among Caregivers in an Underserved Community

Family caregivers face enormous challenges when attempting to oversee the medical, legal, financial, and daily affairs of loved ones with chronic or life-limiting illness. While formal services and agencies exist to assist caregivers with some of these tasks, caregivers in underserved communities do not utilize these services, or utilize them with unsatisfactory results. This study used focus groups (N = 5 groups) with underserved, minority caregivers (N = 22) to explore their experiences related to care provision, including barriers to support service use and challenges navigating systems related to the broad spectrum of caregiving demands. Thematic content analysis revealed three main themes: (1) prior difficulties with formal service use, (2) difficulties navigating financial, legal, and medical systems, and (3) caregivers' personal strategies to address challenges associated with formal service use and systems navigation. Findings from this study identify underserved caregivers' challenges in utilizing formal services, as well as caregiver-identified strategies for supporting their caregiving activities.

Access source material through DOI

Continuity of home-based care for persons with dementia from formal and family caregivers' perspective

Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.

Access source material through DOI

Relational aspects of mastery for frail, older adults: The role of informal caregivers in the care process

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community-dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D-SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care-giving (competence), and care-receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person-centred and integrated care.

Access source material through DOI

Supporting you to take a break

Finding time to have a break from your caring role is vital – welcome to our video series

  • Facing guilt and anxiety: It’s all too easy to lose yourself in your caring role, but you owe it to yourself to look after yourself too
  • Where do I start? Carers share their experiences and tips, explaining why it’s vital to get advice and support
  • Sources of support: Help is available in many forms. Whether you need peer support or professional guidance, you’re not alone
  • Importance of a break - Wales spotlight: Carers in Wales share their views on how taking a break is possible and important
  • Carer stories: It often helps to hear from people in the same situation. Here, carers share their personal experiences and tips
  • Need nore information? This is where we provide all the detail about the variety and range of breaks available to support carers
Original source (some source materials require subscription or permission to access)

Online Resources: What Family Carers Think

In 2018, a survey found that 82% of the Irish population, across all age groups, had used the internet in some way in the three months preceding the survey (Central Statistics Office, 2018). Ninety-seven percent of those aged between 16 and 29, and nearly half of those aged between 60 and 74, had done so. It is clear, then, that  increasingly the internet is becoming a tool that must be understood and utilised as a viable way to supplement supports for family carers.

In order to discover how family carers in Ireland are using – and could be using – online services and supports, Care Alliance Ireland (in consultation with the National Carers Week partner organisations) undertook a survey of Irish family carers in April 2019.

300 family carers responded online, and a summary of their responses are included here. The purpose of this report is to highlight how family carers are using the internet to connect with others, to get supports and information from not-for-profit and statutory agencies, and to manage their lives as family carers. It should be noted that this is not a representative sample of Irish family carers – the survey was administered online and disseminated via the National Carers Week Facebook page and other online channels.

Internet supports are not, of course, a substitute for significant one-to-one supports. There will always be a need for the timely and adequate provision of in-home respite, therapies and all the other supports which are necessary to create a positive environment for a family carer to provide the best possible care to a family member or friend. However, if used in conjunction with existing supports they can be a source of peer support and a way to tackle the social isolation and loneliness that many family carers experience – in particular in rural and geographically isolated locations.

Original source (some source materials require subscription or permission to access)

The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

Background: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.; Objectives: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.; Design: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.; Results: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future.; Conclusion: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

Access source material through DOI

Longitudinal Outcomes Among Family Caregivers of Power Mobility Users

Objective: To examine the change over 1 year in the burden, wheelchair skills, social support, social participation, and mental health of family caregivers providing assistance to older adult powered wheelchair users.; Design: Longitudinal study.; Setting: Community.; Participants: Participants (N=35) included family caregivers (mean age ± SD=63.7±10.2y) who provided at least 2 hours of general care per week for a powered wheelchair user.; Intervention: Not applicable.; Main Outcome Measures: The Power Mobility Caregiver Assistive Technology Outcome Measure (frequency of care and subjective burden), the Wheelchair Skills Test Questionnaire for caregivers (wheelchair skills), the Interpersonal Support Evaluation List-6 (social support), the Late-Life Function and Disability Instrument (social participation), the Hospital Anxiety and Depression Scale (mental health). Measures were taken at baseline, 1, 3, 6, and 12 months. Descriptive statistics were calculated, and a linear mixed model was used to assess changes over time in the outcomes.; Results: The results showed that the caregivers helped on average with 3 powered wheelchair-related activities and 10 other caregiving activities. They also experienced moderate subjective burden and social participation and were within the normal range for depression and anxiety. Moreover, those outcomes remained stable over the 1-year study period. However, the wheelchair skills scores showed significant changes over time, as the scores improved during the first 6 months of the study.; Conclusion: Given that previous research indicated that subjective burden tends to decline over time among caregivers, the findings of stability in this study may reflect increasing needs among this population of caregivers, who may benefit from additional support and interventions. This would need further consideration.

Access source material through DOI

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it.; Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.; Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.; Setting/participants:: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.; Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.; Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

Access source material through DOI

Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting

Adult cancer patients (ACPs) in resource-limited settings disproportionately suffer from inadequate pain control despite advancements in pain management. Family caregivers (FCGs) can support optimal pain control for ACPs in these settings if they are knowledgeable and confident about the needed care. However, the status of FCGs' knowledge and self-efficacy (SE) for pain management in developing countries is not well established. Purpose: To assess the FCGs' knowledge and SE levels for pain management among ACPs while at home in a resource-limited setting. Methods: Using a questionnaire that comprised a Family Pain Questionnaire and Chronic Pain Self-efficacy Scale, data were collected from 284 FCGs of ACPs receiving care from two cancer care centres. Results: The FCGs had moderate knowledge (mean = 41.70 ± 14.1) and SE (mean = 795.95 ± 301.3) levels for pain management at home for ACPs. Majority of the FCGs had low knowledge (52.1%), but expressed higher SE (52.5%). Poor self-rated health among FCGs was significantly associated with low knowledge levels (OR = 1.75; 95% CI 1.024-2.978, p = 0.041). SE was significantly associated with perceiving a low impact of caregiving on health (OR = 1.55; 95% CI 1.074-2.239, p = 0.019), hours of caregiving per week (OR = 0.52; 95% CI 0.315-0.854; p = 0.01) and receiving organisational support (OR = 0.388; 95% CI 0.222-0.679; p = 0.001). Conclusion: The results show a need for deliberate interventions to enhance FCG knowledge and SE for pain management at home as one of the ways of improving cancer pain management in resource-limited settings.

Access source material through DOI

A Tablet App- and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study

Background: Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers.; Objective: The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home.; Methods: In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis.; Results: The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018.; Conclusions: This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery.; International Registered Report Identifier (irrid): DERR1-10.2196/11630.

Access source material through DOI

Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer

PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted. 

Access source material through DOI

Caring for Patients With a Tracheostomy at Home: A Descriptive, Cross-sectional Study to Evaluate Health Care Practices and Caregiver Burden

In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy.; Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home.; Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program.; Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care.; Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.

Access source material through DOI

Dementia Family Caregivers' Willingness to Pay for an In-home Program to Reduce Behavioral Symptoms and Caregiver Stress

Objectives: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP).; Methods: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0.; Results: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session.; Conclusion: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program.; Clinical Trial Registration Number: NCT01892579.

Access source material through DOI

Young carers in Sweden—A pilot study of care activities, view of caring, and psychological well‐being

Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom. 

Access source material through DOI

Dementia in rural settings: examining the experiences of former partners in care

Informal carers, also referred to as partners in care, provide the bulk of care to people living with dementia across a range of community settings; however, the changing experiences and contexts of providing informal care for people with dementia in rural settings are under-studied. Drawing on 27 semi-structured interviews with former partners in care in Southwestern and Northern Ontario, Canada, we examine experiences of providing and accessing care over the course of the condition and across various settings. Our findings illustrate the challenges associated with navigating the system of care, finding people who understand dementia in the surrounding community, negotiating hours of home support, facing resistance to respite from the person with dementia, and feeling pressured into long-term care. We argue that partners' time, bodies and choices are spatially constrained within rural and small-town settings and the current systems of home, community and long-term care.

Access source material through DOI

High Priority Problems Experienced by Informal Caregivers of Individuals With Heart Failure

The purpose of this study was to identify high priority problems experienced by informal caregivers when providing care for individuals with heart failure in the home. This secondary analysis was part of a cross-sectional, descriptive study using online self-report instruments (N = 530), including one researcher-developed item identifying top priority problems for heart failure caregivers. Content and quantitative data analyses were conducted. Performing multifaceted activities and roles that evolve around daily heart failure demands (n = 463) and maintaining caregiver physical, emotional, social, and financial well-being (n = 138) were the two most common themes experienced by caregivers of individuals with heart failure. Each of these two problems had several dimensions. Another theme was providing unending care (n = 40), with two dimensions. 

Access source material through DOI

Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients from South India

Background: Coercion and restraint practices in psychiatric care are common phenomena and often controversial and debatable ethical issue. Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients have received relatively less research attention till date. Aims: Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients. Methodology: This is a hospital-based, a descriptive, cross-sectional study. A total of 200 (n = 200) consecutive patient and their caregivers were chosen between June 2013 and September 2014 through computer-generated random numbers sampling technique. We used a semi-structured interview questionnaire to capture caregivers' attitude and perspective on coercion and restraint practices. Sociodemographic and coercion variable were analyzed using descriptive statistics. McNemar test was used to assess discrete variables. Results: The mean age was 43.8 (±14.9) years. About 67.5% of the caregivers were family members, 60.5% of them were male and 69.5% were from low-socioeconomic status. Caregivers used multiple methods were used to bring patients into the hospital. Threat (52.5%) was the most common method of coercion followed by persuasion (48.5%). Caregivers felt necessary and acceptable to use chemical restraint (82.5%), followed by physical restraint (71%) and electroconvulsive therapy (ECT) (56.5%) during acute and emergency psychiatric care to control imminent risk behavior of patients. Conclusion: Threat, persuasion and physical restraint were the common methods to bring patients to bring acutely disturbed patients to mental health care. Most patients caregivers felt the use of chemical restraint, physical restraint and ECT as necessary for acute and emergency care in patients with mental illness. 

Original source (some source materials require subscription or permission to access)

Family Involvement in Adult Chronic Disease Care: Reviewing the Systematic Reviews

Health care providers, policy makers, and investigators are dependent upon the quality and accuracy of published research findings to inform and guide future practice and research in their field. Systematic reviews, the synthesis of outcomes across studies are increasingly more common in the family literature; however, published review reports often lack information on strategies reviewers used to insure dependability of findings, and minimize methodological bias in the review. In this article, we summarize findings from systematic reviews of interventions and outcomes from family involvement in adult chronic disease care published between 2007 and 2016. In addition, we explore procedures reviewers used to insure the quality and methodologic rigor of the review. Our discussion provides guidance and direction for future studies of family involvement in chronic disease care.

Access source material through DOI

Costs of formal and informal care at home for people with dementia: 'Expert panel' opinions from staff and informal carers

Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers. The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette. Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.

Access source material through DOI

Estimating Informal Caregiving Time from Patient EQ-5D Data: The Informal CARE Effect (iCARE) Tool

Background: Families and friends provide a considerable proportion of care for patients and elderly people. Caregiving can have substantial effects on caregivers' lives, health, and well-being. However, because clinical trials rarely assess these effects, no information on caregiver burden is available when evaluating the cost effectiveness of treatments. Objective: This study develops an algorithm for estimating caregiver time using information that is typically available in clinical trials: the EQ-5D scores of patients and their gender. Methods: Four datasets with a total of 8012 observations of dyads of caregivers and a gamma model with a log-link estimated with the Bayesian approach were used to estimate the statistical association between patient scores on the EQ-5D-3L dimensions and the numbers of hours of care provided by caregivers during the previous week. The model predicts hours of care as mean point estimates with 95% credible intervals or entire distributions. Results: Model predictions of hours of care based on the five EQ-5D dimensions ranged from 13.06 (12.7-14.5) h/week for female patients reporting no health problems but receiving informal care to 52.82 (39.38-66.26) for male patients with the highest level of problems on all EQ-5D dimensions. Conclusions: The iCARE algorithm developed in this study allows researchers who only have patient-level EQ-5D data to estimate the mean hours of informal care received per week, including a 95% Bayesian credible interval. Caregiver time can be multiplied with a monetary value for caregiving, enabling the inclusion of informal care costs in economic evaluations. We recommend using the tool for samples that fall within the confidence intervals of the characteristics of our samples: men (age range 47.0-104.2 years), women (age range 55-103 years).

Access source material through DOI

Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

Background Caregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria. Methods A qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method. Results Fifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists) , other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma). Conclusion This study provides insight into the burden of care of older adults with chronic illness. Caregivers' commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing. 

Access source material through DOI

Outcomes of a Problem-Solving Medication Management Intervention for Informal Caregivers

Older adults with memory loss often require assistance from caregivers to manage their medications. This study examined the efficacy of a problem-solving-based intervention focused on caregiver medication management, problem solving, self-efficacy, and daily hassles. Caregiver health-related quality of life (HRQoL) and patient health care utilization were secondary outcomes. Totally, 83 patients (age 79.9±8.8 years) and their informal caregivers (age 66.9±12 years, female 69.9%, White 85.5%) were randomized; data collection occurred at baseline, 8, 16, and 24 weeks. Linear mixed modeling showed significant decreases in medication deficiencies which were sustained over time. No significant changes in caregiver problem solving, daily hassles, or patient health care utilization occurred between groups or over time. In addition, caregiver self-efficacy and mental HRQoL decreased in both groups. Physical HRQoL decreased in the intervention group, yet increased in the usual care group. Future research should investigate these outcomes in larger and more diverse samples.

Access source material through DOI

Effectiveness of an Educational Nursing Intervention on Caring Ability and Burden in Family Caregivers of Patients with Chronic Non-Communicable Diseases. A Preventive Randomized Controlled Clinical Trial

Objective. To evaluate the effect of the "Caring for Caregivers" program in the caring ability and burden in family caregivers of patients with chronic diseases at health care institutions. Methods. A randomized controlled clinical trial was conducted in 34 relatives of patients with chronic diseases that had cared for them for more than 3 months. Zarit scale was used to measure caregiver burden and the CAI (Caring Ability Inventory) was also used to measure caring ability. An educational intervention was applied based on the "Caring for Caregivers" strategy of the Universidad Nacional de Colombia. Results. Although both groups improved their percentage of unburdened caregivers from the first to the second assessment, the difference between the two assessments was 41.2% in the intervention group whereas it was 11.8% in the control group, being only statistically significant the difference for the intervention group. Regarding the caring ability, no significant changes were identified in both groups. Conclusion. On family caregivers, it was observed that the "Caring for Caregivers" intervention had a positive impact on decreasing burden, but not on improving the caring ability.

Access source material through DOI

How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

Aims Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. Methods Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. Findings Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. Conclusions These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Access source material through DOI

Understanding caregiver burden from a long‐term perspective: The Banyan model of caregiver experiences

Purpose: A multiphase model for experiences of family members of persons with mental illness that considers both positive and negative aspects is proposed. Design and Methods: Mixed methods (semistructured interviews, life history timelines, focus group discussions, and the Experience of Caregiving Inventory) were used with caregivers accessing outpatient services of a nongovernmental organization in urban and rural locations around Chennai, India. Findings: Based on our results, we constructed a multiphase model, which we named The Banyan model of caregiver experiences. The phases are (1) manifestation of symptoms, (2) seeking help, (3) helplessness and attribution, (4) relative control and insight, (5) loss and worries, and (6) finding new meaning. Practical Implications: Our multiphase model allows us to identify in more detail the needs of caregivers at various stages.

Access source material through DOI

The Experience of Adult Children Caregiving for Aging Parents

When the normal progression of life for an aging person is interrupted by a decline in physical and or mental abilities, adult children are often suddenly faced with assuming care of their parent(s). Currently, adult child caregivers of aging parents work up to 100 hours per month at caregiving. Most existing literature is focused on informal caregivers, which can consist of spouses, relatives, and friends' caregiving for persons with debilitating illnesses. Despite the amount of time dedicated to parental caregiving, little is known about the experience of this exclusive caregiver group. The aim of this study was to explore and describe the experience of adult children caregiving for aging parents at any stage of health. A qualitative phenomenological approach was used to interview six daughters and one daughter-in-law. Themes were identified and presented through the use of narratives and poetry. The participants expressed they felt unprepared for caregiving and their culture had a direct impact on the expectations of caregiving. A myriad of unpleasant emotions and loss were voiced, yet their outlooks remained extremely positive. The overall health of adult child caregivers needs to be supported to prepare them for what lies ahead with caregiving. Caregivers report their loved one(s) required several hospitalizations, which lead to performing medical/nursing tasks at home. Nursing then has a unique opportunity during discharge preparation, to identify those who need community, state, and faith-based services. Replication is needed to address the limitation of the number of participants, ethnic, and gender diversity. 

Access source material through DOI

Identification of Sexual Disinhibition in Dementia by Family Caregivers

Purpose: Sexual disinhibition in dementia is understudied and discrepant frequency rates are reported. Measures designed to capture general disinhibition may under-identify sexual disinhibition, and lack of assessment uniformity may contribute to inconsistent endorsement. The current study aimed to determine: (1) whether an item from a commonly used measure tapping into general disinhibition would detect sexual disinhibition, (2) whether differently worded items specifically addressing sexual disinhibition would elicit inconsistent endorsement, and (3) whether different caregiver types would yield discrepant endorsement.; Methods: Data for this cross-sectional, observational study were collected online using items from the Neuropsychiatric Inventory, Cohen-Mansfield Agitation Inventory, and novel items developed to assess sexual disinhibition.; Patients: In total, 779 family dementia caregivers were recruited from social media caregiver groups.; Results: In total, 26.2% of caregivers who explicitly endorsed sexual disinhibition did not endorse general disinhibition. Frequency of endorsement for sexual disinhibition differed depending upon item wording and nature of the caregiver relationship, including higher endorsement by spouses overall.; Discussion: Inquiring generally about disinhibition may under-identify presence of sexual disinhibition. Lack of standardization may contribute to inconsistent frequency rates and characterization of this problem. More work is needed to better understand and identify sexual disinhibition in dementia.

Access source material through DOI

Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia. Interviews were audio-recorded and data analysed using Colaizzi's technique. Analysis revealed the essential structure of a caregiver's journey with three major transitions, namely: (1) Crossing the threshold from ordinary world into caregiving world, (2) Trudging on the road of trials and obstacles, and (3) Settling into a new normalcy. Understanding the lived experience of Asian caregivers can help clinicians in targeting relevant support and information, and prepare new caregivers for the demands of their role.

Access source material through DOI

Seeing the collective: family arrangements for care at home for older people with dementia

With the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these. 

Access source material through DOI

Telling a 'good or white lie': The views of people living with dementia and their carers

Objective: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or 'correct' the person and tell the 'truth', or tell a lie. This paper explores the concept of lying from the perspective of people living with dementia in the community and their informal/unpaid carers.; Methods: A descriptive qualitative study utilising focus groups to collect the data was conducted. Three focus group's with a purposive sample of people with memory problems ( n = 14) and three focus group's with informal/unpaid carers ( n = 18) were undertaken. Qualitative content analysis was used to analyse the data.; Results: All participants considered that blatant lying with the intention to deceive and do harm is not acceptable. However, telling a 'good lie' or 'white lie' to alleviate distress was in certain circumstances considered acceptable. The intention behind the 'lie' in their view had to be to do good, and the informal/unpaid carer telling the lie had to really 'know the person' and be cognisant of family preferences. Some informal/unpaid carers acknowledged that it may be acceptable for health care professionals to tell a 'good lie' or 'small lie' in certain circumstances. However, health professionals need to 'know the person' and need to consider informal/family caregivers' wishes.; Conclusion: Lying was only considered acceptable in the context of knowing the person and when done with the intention not to harm or deceive, undertaken with empathy, and only for the purpose of mitigating the person living with dementia's distress.

Access source material through DOI

A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients

Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.

Access source material through DOI

The role of informal carers in the diagnostic process of heart failure: a secondary qualitative analysis

Background: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process.; Methods: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original interviews were conducted in the participant's home, with carers present in some cases. Interview transcripts were re-analysed using the Framework Method for themes pertaining to informal carers and how they were involved in the diagnostic process.; Results: Informal carers often noticed symptoms, such as breathlessness, before participants. In some cases, carers colluded with participants in normalising symptoms but over time, when symptoms failed to resolve or got worse, they encouraged participants to seek medical help. Adult children of participants commonly initiated help-seeking behaviour. During the diagnostic process, carers coordinated participants' healthcare through advocacy and organisation. Carers were keen to be informed about the diagnosis, but both participants and carers struggled to understand some aspects of the term 'heart failure'.; Conclusions: Carers play a crucial role in HF diagnosis, particularly in initiating contact with healthcare services, and should be empowered to encourage people with HF symptoms to seek medical help. Improving public awareness of HF could mean informal carers are more likely to notice symptoms. The important role of carers in supporting the patient's route to diagnosis should be incorporated into future care pathways and explored in further research.

Access source material through DOI

Fear, Defensive Strategies and Caring for Cognitively Impaired Family Members

One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.

Access source material through DOI

Relationship continuity and person-centred care: An exploratory mixed-methods investigation of spousal partners’ responses to the challenging care needs of those with acquired brain injury

Some partners of people with an acquired brain injury experience the person with the injury and their relationship as continuous with the pre-injury person and relationship, but others experience the person and relationship as very different to what went before. Previous qualitative research has suggested that the experience of continuity may promote a more person-centred approach to how partners respond to challenging care needs. Given the value of triangulating evidence, this exploratory study used a mixed-methods design to investigate this suggestion. Twenty-six partners of people with an acquired brain injury completed the Birmingham Relationship Continuity Measure and a semi-structured interview about their response to challenging care needs. Interviews were coded and scored to provide a measure of the extent to which the participants’ understanding, management and emotional responses showed a person-centred approach. The findings supported the hypothesis. Greater continuity was significantly correlated with a more person-centred approach. Associating relationship continuity and person-centred care is a novel approach to the issue of how family relationships may impact on care quality. Person-centred care can have important benefits for both the giver and receiver of care. Whether it can be promoted through fostering a sense of continuity in the relationship merits further investigation. 

Access source material through DOI

Male Caregivers Report Problems in Caring at Home After Spouses Survive Stroke

Stroke is sudden and often traumatic with results that affect both the patient and family members who provide care. Approximately 40% of individuals caring for family members/friends are male. Transitioning from the noncaregiver role to caregiver can be unsettling. Guided by Friedemann's framework of systemic organization, this secondary data analysis examined problems reported by men caring for spouses in the first year after stroke. Using a mixed methods design, 73 caregivers (CGs) participated in bimonthly telephone interviews for 1 year. For this analysis, only the males caring for spouses (n = 12 married and n = 1 unmarried partner) were examined. These data were analyzed using Colaizzi's rigorous method of content analysis. Five problem themes emerged: 1) adjusting to multitasking in everyday living (Friedemann's system maintenance and individuation), 2) recognizing physical and mental disabilities (coherence), 3) dealing with outside forces and limited resources (individuation), 4) struggling to return to normal (system maintenance), and 5) feeling physically, mentally, and emotionally exhausted (system maintenance). These problem themes demonstrated incongruence as the men sought to maintain their prior lives. Theory-based themes of male stroke CGs' problems were uncovered that can be used to target interventions to help them achieve balance between incongruence and congruence in their lives.

Access source material through DOI

An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature

Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing–being–becoming–belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the ‘doing’ domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the ‘being’ domain. The ‘becoming’ domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The ‘belonging’ domain depicts ways in which caregivers’ connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings. 

Access source material through DOI

Caregiver Burdens of Family Members with Alzheimer's Disease

Alzheimer's disease is the sixth leading cause of death in the United States and more than five million Americans are living with the disease (Alzheimer's Association, 2016). Alzheimer's disease takes a devastating toll on caregivers. According to Richardson, Lee, Berg-Weger, and Grossberg (2013), many factors influence the perceived burden of caring for a relative or friend with Alzheimer's disease (Richardson et al., 2013). These factors include characteristics of the caregiver, such as kinship ties, gender, psychological resources, and coping strategies. The purpose of this study was to compare the perceived caregiver burdens of the primary, full-time, at-home caregiver of patients with Alzheimer's disease to the perceived caregiver burdens of patients with Alzheimer's disease who attend an adult day care center. Using a descriptive quantitative research design, data was collected using the Caregiver Burden Inventory (CBI), which is a 24-item measure to assess caregivers of family members with Alzheimer's disease and obtain demographic data. A conceptual model developed by Neuman (1995) provided the health promotion and primary prevention framework of this study. Findings of the study indicate no difference in the perceived caregiver burdens whether the caregiver takes care of the family member with Alzheimer's disease 24 hours a day or has respite from care five days a week at an adult care center. Additionally, findings also indicate the need to refine community and professional understanding of the challenges caregivers face, and provide valuable information regarding necessary improvements of services for caregivers of patients with Alzheimer's disease.

Original source (some source materials require subscription or permission to access)

Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

Objective: Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region. Method: This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims. Results: About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication. Significance of Results: EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

Access source material through DOI

Seeing and Supporting LGBT Older Adults' Caregivers and Families

The article focuses on the role of biological or legal family members of lesbian, gay, bisexual, and/or transgender (LGBT) older adults, in providing better care, comfort and safety, and talks of nurses to develop trust to recognize and communicate, and provides chart on questions to be asked.

Access source material through DOI

The experiences of family caregivers providing palliative cancer care in Thailand

Background: Family caregivers have a significant role in Thai healthcare, taking on responsibilities of health professionals. The purpose of this research was to explore Thai family caregivers' experiences of providing palliative cancer care. Methods: This qualitative study took a phenomenological approach. In-depth interviews were conducted with 14 family caregivers aged 33–72 years in a regional hospital in the north of Thailand. The data was analysed using Colaizzi's phenomenological approach. Rigour was established by following Lincoln and Guba's guidelines for qualitative research. Findings: The experiences of Thai family caregivers providing palliative cancer care could be categorised into four themes: caring as a team; caring as supportive care; taking care to keep patients happy; and caring for the self while looking after a relative. Conclusion: Health professionals can support family caregivers to deliver the best care for cancer patients and to help them decrease their stress. This study discusses ways how this may be done.

Access source material through DOI

Caring for stroke survivors: experiences of family caregivers in Sri Lanka - a qualitative study

Background: Stroke is a life-changing event for both stroke survivors and their family caregivers. After receiving acute care at the hospital, family members are expected to take care of stroke survivors at home and to continue treatment and rehabilitation. The new role of "informal caregiver" is a challenge that creates many difficulties for family caregivers that are not explicit in the Sri Lankan context.; Objectives: This study aimed at exploring family caregivers' experiences of providing informal care for dependent stroke survivors.; Methods: The sample was chosen by purposive sampling with a maximum variation by age, ethnicity, religion, educational level, relationship, and monthly income. Ten informal family caregivers to stroke survivors with hemiplegia who had been treated at the National Hospital of Sri Lanka participated in in-depth interviews analyzed using conventional content analysis.; Results: Qualitative content analysis of data resulted in an overriding theme, "Caring with love, against all odds," along with four categories, "Life alterations," "Lack of resources," "Compassionate care," and "Coping strategies." Although the increased workload, restricted social life, physical problems, and knowledge and financial deficits were challenging for the family caregivers, self-strength and supportive social networks helped them to compassionately care for their stroke survivor.; Conclusions: The phenomenon of family caregivers providing informal care for stroke survivors was explicated as compassionate care, notwithstanding numerous difficulties. The findings motivate further research and strategies to minimize family caregivers' burden and facilitate the positive aspects of caregiving to promote the health and well-being of both stroke survivors and their families.

Access source material through DOI

Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient-caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?; Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.; Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.; Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge. Implications for rehabilitation Caregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after stroke Doing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situation Caregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team.

Access source material through DOI

On the road and away from home: a systematic review of the travel experiences of cancer patients and their families

Purpose: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families.; Methods: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies.; Results: A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home.; Conclusions: Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.

Access source material through DOI

Informal Caregivers' Learning Experiences With Self-Management Support of Individuals Living With Bipolar Disorder: A Phenomenological Study

Background: The degree of informal caregiver involvement influences the self-management of individuals living with bipolar disorder (BD).; Objective: This article aims to provide a description of informal caregivers' learning experiences in self-management support of BD in order to guide professionals in tailoring future psychosocial and psychoeducational interventions.; Design: In-depth open interviews with 10 informal caregivers of patients with BD who followed treatment in the context of specialized outpatient bipolar care were conducted.; Results: Four learning phases emerged from the phenomenological analysis describing the informal caregivers learning process: (1) understanding BD, (2) overcoming the dilemmas in self-management support for individuals living with BD, (3) dividing tasks and responsibilities, and (4) acquiring a personal definition of self-management support for individuals living with BD.; Conclusion: By grasping the concept of BD, informal caregivers gradually learn how to overcome dilemmas resulting from living with someone with BD, and how to control the expression of emotions. They learn to reflect on the nature of conflicts and how to share the responsibilities of illness management with individuals living with BD and professionals. Mastering these skills eventually allows them to define and delimit their supporting informal caregiver role in the self-management of BD.; Practice Implications: Our findings provide information regarding the educational needs of informal caregivers to tailor counseling, and psychosocial and psychoeducational interventions in specialized outpatient care for individuals living with BD.

Access source material through DOI

Testing a pain self-management intervention by exploring reduction of analgesics' side effects in cancer outpatients and the involvement of family caregivers: a study protocol (PEINCA-FAM)

Background: Pain is one of cancer patients' most frequent and distressing symptoms; however, analgesics' side effects often increase symptom burden. Further, with the home rapidly becoming the primary cancer care setting, family caregivers (FCs) commonly play central roles in patients' pain self-management, but with little or no preparation. One US-tested intervention, the PRO-SELF© Plus Pain Control Program (PCP), designed to support cancer outpatients and their FCs in pain self-management, is currently being tested in the Swiss multi-centre PEINCA study. The current PEINCA-FAM study is a sub-study of PEINCA. The aims of PEINCA-FAM are: a) to test the efficacy of the adapted German PRO-SELF © Plus PCP to reduce side effects of analgesics; b) to enhance patients'/FCs' knowledge regarding cancer pain; and c) to explore FCs' involvement in patients' pain self-management. Methods: This mixed methods project combines a multi-centre randomized controlled clinical trial with qualitative data collection techniques and includes 210 patients recruited from three oncology outpatient clinics. FCs involved in patients' pain self-management are also invited to participate. After baseline evaluation, eligible participants are randomized to a 6-week intervention group and a control group. Both groups complete a daily pain and symptom diary. Intervention group patients/FCs receive the weekly psychoeducational PRO-SELF© Plus PCP interventions; control group patients receive usual care. After completing the six-week study procedures, a subsample of 7–10 patients/FCs per group and hospital (N = 42–60) will be interviewed regarding their pain management experiences. Data collection will take place from April 2016 until December 2018. An intent-to-treat analysis and generalized linear mixed models will be applied. Qualitative data will be analysed by using interpretive description. Quantitative and qualitative results will be combined within a mixed method matrix. Discussion: In clinical practice, specially trained oncology nurses in outpatient clinics could apply the intervention to reduce side effects and to enhance patients'/FCs' self-efficacy and pain management knowledge. Trial registration: The PEINCA study is registered in the Clinical Trials.gov site (code: NCT02713919, 08 March 2016).

Access source material through DOI

Overestimation of hours dedicated to family caregiving of persons with heart failure

Aims: The aim of this study is to profile the family caregivers of people living with heart failure, to determine the perceived and real time devoted to daily care and to identify the factors associated with caregivers’ overestimation of time dedicated to care. Background: The time spent by family caregivers on daily care is related to overload, but there are differences between real and perceived time spent. The reason for this difference is unknown, as is its impact on the caregiver. Design: Multicentre, cross‐sectional study. Methods: This study forms part of a longitudinal, multicentre, ambispective cohort investigation. The study population was composed of 478 patient–family caregiver dyads and the data were collected over 2 years from 2014 ‐ 2016. Results: The mean time perceived to be spent on daily care was 8.79 hr versus a real value of 4.41 hr. These values were positively correlated. A significant correlation was also found between the overestimation of hours spent and the age of the caregiver, the duration of the caregiving relationship and the number of people providing support and with the patient's level of dependence and self‐care. Conclusion: The overestimation of time dedicated to care seems to be related to patients’ and caregivers’ characteristics, such as functional status, caregiver burden, age and cohabitation. These patterns should be considered by nurses when carrying out assessment and care planning with these patients and their caregivers.

Access source material through DOI

Factors related to sense of competence in family caregivers of people living with dementia in the community: a narrative synthesis

Objectives: Sense of competence defines a caregiver's feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver's perception of their sense of competence.; Design: A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.; Results: Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.; Conclusions: The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

Access source material through DOI

"Neither a wife nor a widow": an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.

Access source material through DOI

Why the caregivers of bipolar patients need to be in constant touch with a physician: A qualitative study of text messages from patient caregivers to a physician

Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.

Access source material through DOI

“I see myself as part of the team” – family caregivers’ contribution to safety in advanced home care

Background: The use of medical technology and the various contributing and interdepending human factors in home care have implications for patient safety. Although family caregivers are often involved in the provision of advanced home care, there is little research on their contribution to safety. The study aims to explore family caregivers in Home Mechanical Ventilation (HMV) safety experiences and how safety is perceived by them in this context. Furthermore, it seeks to understand how family caregivers contribute to the patients’ and their own safety in HMV and what kind of support they expect from their health care team. Methods: An explorative, qualitative study was applied using elements from grounded theory methodology. Data were collected through individual interviews with 15 family caregivers to patients receiving HMV in two regions in Germany. The audiotaped interviews were then subject to thematic analysis. Results: The findings shows that family caregivers contribute to safety in HMV by trying to foster mutual information sharing about the patient and his/her situation, coordinating informally health care services and undertaking compensation of shortcomings in HMV. Conclusion: Consequently, family caregivers take on considerable responsibility for patient safety in advanced home care by being actively and constantly committed to safety work. Nurses working in this setting should be clinically and technically skilled and focus on building partnership relations with family caregivers. This especially encompasses negotiation about their role in care and patient safety. Support and education should be offered if needed. Only skilled nurses, who can provide safe care and who can handle critical situations should be appointed to HMV. They should also serve as professional care coordinators and provide educational interventions to strengthen family caregivers’ competence.

Access source material through DOI

Older Brazilian caregivers and their lived experiences of caring—A hermeneutic phenomenological study

Aims and objectives: To understand the lived experiences of older Brazilian carers. Background: For many caregivers, the practice of caregiving becomes their daily lives, embedding in their care and the experiences, beliefs, learning and techniques that contribute to the meanings these caregivers attach to their world. Studies have reported on the experiences of caregivers in general; however, few studies have addressed the unique characteristics of older caregivers. Method: Phenomenological research was conducted in the homes of these persons who were registered in a public programme of home care. This study utilised recorded interviews with a guiding question and roadmap for characterisation. The transcribed interviews were analysed based on philosophical hermeneutics and on the understanding of the hermeneutic circle. The units of meaning were discussed from the perspective of Heidegger's phenomenology. Results: Six older primary caregivers participated, aged between 62–84 years. The following units of meaning were developed: the daily life of being in the world as an older person caring for another older person, the historicity and their disclosedness to the world of care. Conclusions: The worldliness of these people is influenced by a taxing routine and being overloaded and lonely, which renders these caregivers vulnerable because of this routine and because of the inherent weaknesses induced by the ageing process. Relevance to clinical practice: This research can help health professionals better understand the worldliness of older caregivers. Such understanding will enhance the assistance available to caregivers, which must extend beyond the care of the sick person: interventions can reduce their overburden and risk of illness, improving their experiences as caregivers and their quality of life. 

Access source material through DOI

'It's a traumatic illness, traumatic to witness': a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T‐cell lymphoma

Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL. Methods: Single, semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Results: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person‐centred vs. organization‐centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub‐themes within each theme provide more detail about caregiver experiences. Conclusions: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL. 

Access source material through DOI

Experiences of bereaved family caregivers of patients with CTCL

Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative. 

Access source material through DOI

Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity

Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload.; Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital.; Results: Results revealed two main themes and eight subcategories: (1) The nature of informal care: describing informal care management work, (personal assistant work; care provider work; family support work; and emotional self-regulation work), and (2) Mediating factors that impacted people's capacity to manage workload (carer intrinsic factors; injured person characteristics; family circumstances; and changes over time.) Conclusion: Rehabilitation providers supporting people following TBI need to focus on broad family contexts; understand the nature of work being undertaken, and carer capacity to carry out that work; and be aware of the unique and changing circumstances of families to better support informal carers. Implications for rehabilitation Rehabilitation services need to focus on broad family contexts rather than focus on the injured individual in isolation. Understanding the nature of the work being undertaken by informal carers, and their capacity to carry out that work is important when considering supports. Rehabilitation professionals need to consider and respond to the impact that changing circumstances have on the capacity of informal care networks to manage care workload.

Access source material through DOI

Turkish Family Decision Making Process for Placing a Loved One with Dementia in Long-Term Care

Aims: This descriptive qualitative study was conducted in an attempt to understand the experiences of family members of people with dementia in the process of deciding to institutional their care. Methodology: The data were collected from 15 caregivers using a semi-structured data form with in-dept interviews. The data were analyzed using qualitative content analysis. Results: Three main themes identified were having difficulty providing care, seeking solutions to maintaining care at home, and difficulty in decision-making to place their family members in a long-term care facility. Conclusions: Turkish families experiences difficulties about decision making process for placing their loved ones in a long term care. Results showed us that they need support in this process. Nurses should consider their feelings and support them.

Original source (some source materials require subscription or permission to access)

Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer's disease: A narrative review

Objective: The aim of this review is to make a state of the art of the potential influence of neuropsychiatric symptoms (NPs) on caregiver stress and vice versa.; Methods: We searched PubMed and Google Scholar for potential eligible articles.; Results: Patients with Alzheimer's disease (AD) usually need high levels of care in all activities of daily living, most of them provided by family members, friends, or informal caregivers. Caregivers have to cope with both age-related conditions and dementia-related factors. Therefore, caregiving in dementia is more difficult and stressful than caregiving for older adults, affected by other conditions. Neuropsychiatric symptoms, such as anxiety, agitation, disinhibition, aggressive behavior, and sleep disturbances are more closely related to caregiver burden, and associated with more negative outcomes such as decline in their general health, quality of life, and social isolation. Caregiver burden worsens relationship between caregiver and patients with AD. Thus, this relationship may increase the frequency and severity of NPs. Predictors of burden were being a woman, a spouse, and old person with immature coping mechanisms, social isolation, with insufficient knowledge about dementia, poor premorbid relationship with patient, and high levels of negative expressed emotions.; Conclusion: Because of the bidirectional relationship between caregiver burden and NPs, the active management strategies of dementia care should include early identification and treatment risk factors for both caregiver stress and NPs in patients with AD. Therefore, to improve one of them can be exert beneficial for the other.

Access source material through DOI

Health information management practices in informal caregiving: An artifacts analysis and implications for IT design

Introduction: Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives: To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods: Semi-structured interviews were performed with ten informal caregivers-half of whom were caring for persons with dementia-and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results: Caregivers' PHIM practices aimed to support daily care management and decision-making on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion: The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers' practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation.

Access source material through DOI

296Exploring Personhood in Formal Care Provision in Ireland: Perspectives from Family Carers of People with Dementia

Background: Personhood in dementia is about treating people with dementia with dignity and respect and in a manner that supports their sense of self. It is a key element of person-centered care and a guiding principle in dementia care policy in Ireland. However, there is uncertainty around the concept of personhood and in particular how it is operationalised within formal care provision. This research examines the experiences and perceptions of family carers of people with dementia in relation to personhood and formal care provision.

Methods: This research is theoretically based on personhood as a relational concept. Using semi-structured interviews, family carers are asked about their perceptions of personhood in dementia within the context of formal care provision, supports and services. The interview questions center on important elements of personhood such as communication, flexibility, choice, respect, dignity and self-identity. Thematic analysis is used to examine the participants’ views. A total of 15 interviews were conducted with family carers, which included, spouses, children and siblings of people with dementia living both in the community and in long-term care.

Results: Preliminary results indicate that family carers and people with dementia had little to no choice in the services and supports provided to them. They were accepting of the services they received but identified elements of services which were not supporting of personhood. Some family carers were disappointed by the limited to no supports offered to them.

Conclusion: These findings are very relevant to dementia care in Ireland, both to the design of the system as a whole and also to the provision of care at an individual level. The results are significant for policy makers seeking to ensure that personhood is central in the implementation of current dementia policy and in the regulation of future formal care provision for people with dementia in Ireland.

Access source material through DOI

Informal support for older adults is negatively associated with walking and eating during hospitalization

Processes related to daily care of older adults during hospitalization, such as mobility and nutrition, have long-term consequences for their health and functioning. Although instrumental support provided by family members during hospitalization is highly prevalent, its relationship to older adults' actual walking and eating is unknown. Data on walking level (walking outside vs. inside the room) and nutritional intake were collected from 493 independent older adults admitted to internal medicine wards through up to three daily interviews using validated questionnaires. Informal support with walking and eating was assessed with the modified Informal Caregiving for Hospitalized Older Adults scale. Multivariate regression showed that informal support with walking and eating was associated with greater likelihood of walking inside the room and with lower nutritional intake. This association between informal support and less walking and eating call for routine functional assessments and tailored counseling of informal caregivers to meet older patients' support needs.

Access source material through DOI

Transition of Persons with Developmental Disabilities from Parental to Sibling Co-Residential Care: Effects on Sibling Caregiver Well-Being and Family Functioning

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). This dissertation looks at the wellbeing and family functioning of siblings who become the co-residential caregiver following the transition of a brother or sister with DD from parental to sibling co-residential care. The family systems framework was the theoretical lens for understanding caregiver wellbeing and overall family functioning. Hermeneutic-narrative inquiry was the approach for interviewing and exploring the stories of 10 sibling caregivers of a brother or sister with DD following their transition from parental to sibling co-residential care. Two analytical approaches were used. Firstly, structural analysis involved a within-case analysis of individual participants' stories of transition to determine the meaning ascribed to and identified with the caregiving experience. Secondly, thematic narrative analysis included an across-case analysis to identify themes related to caregiver wellbeing, family functioning, reciprocity of mutual support, and anticipating the caregiver role versus actual experience. Findings from the structural analysis showed that the meaning of the caregiving experience included a duty, obligation, responsibility and commitment to the family. Results from the thematic narrative analysis showed overall lower social and emotional wellbeing among participants, reduced functionality among family members with respect to lower emotional and social functioning, reduced engagement in recreation/leisure activities, as well as lower economic functionality for sibling caregivers with no spouse or children. Sibling caregivers reported higher overall wellbeing and family functioning due to availability of formal supports (e.g., respite care, day program services), and informal support, such as having support from a spouse, child, or extended family member. Findings regarding reciprocity showed increased instrumental support among sibling caregivers and reduced emotional support. When anticipating the role, caregivers described knowing they would assume the role but were unclear of the shift to assuming a parental rather than sibling role. Other unanticipated discoveries included feeling captive to the role and feelings of helplessness. Caregivers' actual experiences involved learning to manage new challenges, society's patronizing view of persons with DD, and an overall sense of pride in caregiving for giving back to their sibling with DD. Grief and future planning were also discussed, including the effect of grief on the sibling caregiver, sibling caregiver's children and sibling with DD. Future planning looked at the aspects of planning and not having planned for the future of the sibling with DD. The study concludes with implications for current and future social work practice and research, as well as the study's strengths and limitations.

Original source (some source materials require subscription or permission to access)

Measuring caregiver activation to identify coaching and support needs: Extending MYLOH to advanced chronic illness

Introduction: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses. Methods: MYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions. Results: All MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered “not my responsibility” to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific ‘hotspots’. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness. Conclusions: MYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems’ performance in integrating caregivers into the care management of patients with complex life-limiting illness. 

Access source material through DOI

Imagining care: Responsibility, dependency, and Canadian literature by A. DeFalco

In Imagining care: Responsibility, dependency, and Canadian literature, Amelia DeFalco explores the ways in which both fictional and personal-biographical Canadian narratives can enhance our understanding of the thorny issues associated with care – the dangers, liabilities and contradictions that often inhere in caregiving efforts and relations of care. In consideration of the common, concrete circumstances in which ordinary individuals find themselves providing unanticipated, non-professional forms of (private) care to their children, parents, other family members or friends, DeFalco exposes gaps in ethics of care philosophical theory in which challenging issues, such as inconsistencies, shortcomings and breakdowns of care, are often absent, overlooked, discounted or left largely unaddressed

Access source material through DOI

Interrogating theories of care in the Indian context

Nussbaum's capabilities approach highlights the need for integrating vulnerability, dependency and care work with liberal principles of individuality and rationality. However, capabilities offer a statist, juridical and formal model of objectified care, whose adoption would lead to greater paternalism, especially in the context of public welfare institutions in India. This article argues that one needs to move beyond liberal theory, while engaging with vulnerability and care work in institutional contexts. It defends informal care as a multilayered practice in public sector institutions in India, to which deliberation is central. It acknowledges the inevitability of flexibility, interdependence, plurality and particularity in informal caregiving practice.

Access source material through DOI

The meaning of care: The social construction of care for elderly people by Bernard Weicht

Weicht’s latest book represents a profound reflection on informal care for elderly people from a social-constructivist perspective – a reflection that also provides a thorough account of gendered practices, power relations and contextual constraints in how care norms, practices and relationships are discursively constructed. 

Access source material through DOI

Gender-based analysis of working-carer men: a North American scoping review

The purpose of this scoping review is to find all existing North American literature on male working carers and compare this information with female working carers. Searches were performed using various databases, published between 1996 and 2016. A total of 506 articles were found and 45 (<i>n</i> = 45) met all inclusion criteria. Five qualitative themes were identified: caregiving characteristics; motives for caring; work impacts; health impacts; and caring in the workplace and coping strategies. This review narrows the gap in the literature with respect to the similarities and differences between male and female working carers, and the way in which they approach caregiving tasks.

Access source material through DOI

The spectrum of family caregiving for adults and elders with chronic illness Edited by L.D. Burgio, J.E. Gaugler and M.M. Hilgeman

This book focuses on caregiving in the US, where, as elsewhere, family carers are the primary source of long-term care; one estimate presented is that 43 million people in the US are carers of people aged 50 years and over. Most family carers are providing support to adults with chronic illness.

Access source material through DOI

Home Alone Revisited: Family Caregivers Providing Complex Care

The AARP Home Alone study in 2012 was the first national look at how families, neighbors, and friends are managing medical/nursing tasks—that is, the complex care associated with administering multiple medications, changing dressings, handling medical equipment, and providing many other kinds of help that were formerly offered by trained professionals.  (See www.aarp.org/homealone.) Seven years later, this Home Alone Revisited study sought a deeper understanding of what family caregivers who perform medical/nursing tasks experience. Employing an oversampling of multicultural groups, it took a closer look at specific difficult tasks, such as managing incontinence, pain, and special diets. It also offered greater attention to resources and outcomes as well as multicultural, gender, and generational experiences. A nationally representative, population-based, online survey of 2,089 family caregivers provided the basis for our analyses. An organizing framework, qualitative findings, and multivariate analyses provided further insights into the stories these family caregivers told us. Their voices led to our recommendations, found in these pages, for professionals, health care organizations, policy makers, and private-sector stakeholders.

Original source (some source materials require subscription or permission to access)

Informal caregivers in hospitals: Opportunities and threats

Objective: High hospital costs are a challenge that health system face. Additionally, studies identified manpower deficiency as a problem in health system. Hospital is a place where patients with different physical and mental conditions come to. Their families and friends' companionship can facilitate this situation for them. This study illustrates the roles of informal caregivers in hospital.; Method: This is a phenomenological qualitative study. Data were gathered through semistructured interviews. We interviewed 22 informal caregivers and 9 nurse staffs from different departments of hospital. They were selected through purposeful and snowball sampling approach. The framework method was used for data analysis.; Results: We found 3 main themes including (a) roles of informal caregivers, (b) opportunities of presence of the informal caregivers in the hospital, and (c) threats of presence of informal caregivers.; Conclusions: This study shows some roles for informal caregivers including mental supports, consultation, decision-making, and care roles. Concerning the shortage of manpower in Iran's hospitals, nurses have less time to take care of each patient; therefore, using informal caregivers as an implicit strategy to overcome nursing shortage and to reduce hospital costs seems to be beneficial. We suggest that an appropriate plan is necessary to make use of them for filling this gap to some extent, as well as providing training sessions and facilities for companions acting as informal caregivers.

Access source material through DOI

Mental capacity legislation in the UK: systematic review of the experiences of adults lacking capacity and their carers

AIMS AND METHOD: Capacity legislation in the UK allows substitute decision-making for adults lacking capacity. Research has explored the experiences of such adults and their carers in relation to the Adults with Incapacity (Scotland) Act 2000, and the Mental Capacity Act 2005 in England and Wales. A systematic review of the relevant research was performed using a framework method. RESULTS: The legislation provided mechanisms for substitute decision-making which were seen as useful, but there were negative experiences. Decision-making did not always seem to follow the legislative principles. Awareness of the legislation was limited. Most research was qualitative and some was of low methodological quality. Data were too heterogeneous to allow comparisons between English and Scottish law. CLINICAL IMPLICATIONS: Capacity legislation was generally viewed positively. However, some experiences were perceived negatively, and the potential benefits of the legislation were not always utilised. 

Access source material through DOI

Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a "key worker" model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning. 

Access source material through DOI

Gender Differences in Spousal Caregivers’ Care and Housework: Fact or Fiction?

Many studies reveal a gender gap in spousal care during late life. However, this gap could be an artifact of methodological limitations (small and unrepresentative cross-sectional samples). Using a data set that overcomes these limitations, we re-examine the question of gender differences in spousal care and housework adjustment when a serious illness occurs.We use biannual waves between 2001 and 2015 of the German Socio-Economic Panel Study and growth curve analyses. We follow couples longitudinally (identified in the household questionnaire) to analyze shifts in spousal care hours and housework plus errand hours that occur as a response to the spousal care need. We test for interactions with levels of care need and with gender.We found that men increase their care hours as much as women do, resulting in similar care hours. They also increase their housework and errand hours more than women do. Yet at lower levels of spousal care need, women still do more housework and errands because they spent more time doing housework before the illness. Even in a context of children’s decreasing availability to care for parents, male spouses assume the required caregiving role in systems relying on a mixture of public and private care.

Access source material through DOI

Managing Visitors During the Hospital Stay: The Experience of Family Caregivers of Patients With Traumatic Brain Injury

Family caregivers of patients with moderate-to-severe traumatic brain injury (TBI) regularly visit the patient during the hospital stay and are involved in their care. As impairments caused by the TBI often preclude the patient from stating preferences for visitors, family caregivers often make decisions about visitors on the patient's behalf during the hospital stay. However, limited literature investigates this process. The purpose of this study was to describe family caregivers' experience of visitors while the patient with moderate-to-severe TBI is hospitalized. Authors used grounded theory to conduct 24 interviews with 16 family caregivers. Findings showed family caregivers manage welcome and unwelcome visitors throughout the hospital stay to protect the patient's physical and emotional safety and to conserve their own energy. Staff had limited involvement in management of unwelcome visitors. These findings have practice implications for educating hospital staff about providing family nursing and assisting families to manage unwelcome visitors and about policy implications for improving hospital visiting policies.

Access source material through DOI

The Challenges, Emotions, Coping, and Gains of Family Caregivers Caring for Patients With Advanced Cancer in Singapore: A Qualitative Study

Background: Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. Objective: The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. Methods: This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Results: Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. Conclusions: This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Implications for Practice: Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.

Access source material through DOI

Using a Flexible Diary Method Rigorously and Sensitively With Family Carers

Health and social science researchers are increasingly interested in the range of new possibilities and benefits associated with diary methods, particularly using digital devices. In this article, we explore how a flexible diary method, which enables participants to choose the device (i.e., paper notebook, tablet, or computer) and medium (i.e., text, photographs, sketches) through which they narrate their experiences, can be used to promote sensitive and rigorous research engagement with family carers to people with dementia. We used a diary interview method with 10 carers over the course of 6 weeks to explore how they experience and interpret the changing behaviors of their cognitively impaired kin. We reflect on how the quality of diary data can be enhanced alongside the ethical dimensions of research with carer populations, through different forms of diary keeping, regular interaction with participants, reflexive practice, and follow-up interviews. 

Access source material through DOI

What Caregivers Need From Clinical Nurse Specialists

In the US today, there are more than 32 million unpaid family caregivers providing complex care to a family member in the home. In 2012, American Association of Retired Persons (AARP) released the results of Home Alone: Family Caregivers Providing Complex Chronic Care (http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf). The study, conducted by the AARP Public Policy Institute and the United Hospital Fund, was a nationally representative population-based online survey of 1677 family caregivers to determine the medical/nursing tasks they performed. Study findings challenged the notion of family caregiving as limited to personal care, such as bathing and dressing, and assistance with household chores, shopping, and paying bills. Here, Fulton talks about caregiver's lack of knowledge in home and post-op care.

Access source material through DOI

“It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.

Access source material through DOI

Personalisation, personal budgets and family carers. Whose assessment? Whose budget?

Summary: The policy of personalisation in English adult social care prioritises choice and control by service users over the support they receive. Carers also have rights to assessments and support, but these rights have developed separately, so interdependencies between carers and service users may be overlooked. Moreover, it may be difficult to reconcile these divergent policies in routine practice. This article reports findings from a study examining the roles played by carers in England in the processes of assessment, support planning and management of personal budgets for disabled and older people. The study was conducted between January 2011 and February 2013. It involved a survey of 16 adult social care departments across 2 English regions, and interviews with personalisation and carers lead officers in three local authorities. The Framework approach was used to manage the data, and analysis was done thematically. Findings: Practice was fragmented and inconsistent. Carers were reported to be involved in service users' assessments, and also asked about their willingness and ability to continue caring, but not necessarily about their own needs. Separate carers' assessments were reported to be usually offered, but take-up was low and lead officers' opinions about their value varied. Any help given by carers reduced the level of service users' personal budgets, but there was no evidence that carers' own needs (as identified in carers' assessments) were taken into account. Applications: Greater clarity and consistency is needed, especially the linking of service users' and carers' assessments and finding appropriate ways to meet both. These changes will become increasingly urgent with the implementation of the 2014 Care Act. 

Access source material through DOI

Decision making for people living with dementia by their carers at the end of life: A rapid scoping review

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

Access source material through DOI

Time Use and Experienced Wellbeing of Older Caregivers: A Sequence Analysis

The diminished wellbeing of caregivers is well documented, but studies typically draw upon coarse measures of time use and thus provide limited understanding of the role of specific care activities in the daily lives of care providers. This study uses time diary data to explore whether there are signature care patterns throughout the day and whether these care patterns have implications for caregivers’ experienced wellbeing.Using a national sample of 511 time diaries from older caregivers in the Disability and Use of Time supplement to the Panel Study of Income Dynamics, we examine minutes of care provided on the prior day, overall and for four broad care categories (household, personal care, transportation, and visiting), and patterns of care over the day, the latter based on sequence and cluster analysis.Older caregivers spend on average 2.3 hr providing care to another adult on care days. Caregiving follows a roller-coaster pattern over the day, peaking at mealtimes. Sequence analysis suggests five distinctive caregiving patterns, which vary by both demographic characteristics of the caregiver (gender, work status) and care arrangement type (relationship to recipient, whether sole caregiver to recipient). The 40% who provide only marginal assistance of about 1 hr report lower experienced wellbeing than the 28% who provide sporadic assistance with a mix of activities for about 2 hr.A substantial share of older caregivers provides only 1 hr of assistance on a given day but appears to be at risk for reduced wellbeing. Better understanding of the reason for their marginal involvement and reduced wellbeing is warranted.

Access source material through DOI

The impact of personal budgets on unpaid carers of older people

Summary: This paper focuses on the impact of a personal budget – either in the form of a direct payment or managed personal budget – on the role of unpaid carers of older budget holders. Data were collected via postal survey of 1500 unpaid carers and semi-structured interviews with 31 carers. Findings: Unpaid carers played a central role in supporting older budget holders irrespective of the type of budget received. The allocation of a personal budget may have decreased the amount of ‘hands-on’ care they provided, enabling them to do different things for and with the person cared for, but most did not relinquish direct involvement in care provision. Both kinds of personal budget provided greater flexibility to juggle caring tasks with other roles, such as childcare or paid employment. However, carers supporting direct payment users did experience higher levels of stress. This seemed linked to the additional responsibilities involved in administering the direct payment. Carers seemed relatively unsupported by their local Adult Social Care Department: the survey found that only one in five said they had ever received a carer assessment. Application: The findings offer a detailed exploration of the impact of personal budgets on carers, suggesting that even in countries with relatively well-developed systems of support for carers such as England their impact remains overlooked. The paper may be of interest to social work practitioners, managers, academics and social work policy specialists working in countries that have, or are about to introduce, personal budgets or other forms of cash-for-care scheme.

Access source material through DOI

Caregivers for people at end of life in advanced age: knowing, doing and negotiating care

Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3–6 months after an older person’s death and invited to take part in the current study. Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women. Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within: the transcripts, and feedback and discussion with participants. Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.

Access source material through DOI

Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: a systematic review of qualitative studies

Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.

Access source material through DOI

Carers' involvement in decision making about antipsychotic medication: a qualitative study

Background: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. Objectives: The aim of this study was to explore carers' participation in antipsychotic medication decision making. Methods: Snowball sampling was used to enrol 29 carers in this study. Of these carers, 19 participated in semi-structured interviews, and ten participated in a focus group. Data were analysed thematically. Results: Four main themes emerged from the analysis. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasised that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers. Conclusion: Health professionals could consider improving the extent to which they collaborate with carers in medication decisions.

Access source material through DOI

Assessing care‐giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: a scoping review

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. Method: a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, a second targeted search was conducted of the general care‐giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care‐giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care‐giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care‐giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.

Access source material through DOI

‘Add info and stir’: an institutional ethnographic scoping review of family care-givers’ information work

Family care-givers are increasingly expected to find, understand and use information to meet the complex needs of older adults in their care. A significant number of studies, however, continue to report that care-givers’ information needs are unmet. Following Arksey and O'Malley's scoping review framework, this study examined 72 articles for the range and extent of available research on the information work done by family care-givers of community-dwelling older adults living with dementia. To untangle the complex relationship between information and care, this scoping review maps out (a) the ways scholarly literature conceptualises the informational components of family care-givers’ work and (b) the degree to which scholarly research acknowledges these components as work. An institutional ethnography inflection enhanced the scoping review framework, enabling the privileging of lived experiences, questioning of assumptions of language used, attending to authors’ positioning and highlighting care-givers’ information work made invisible throughout the processes of academic research.

Access source material through DOI

Receipt of Formal and Informal Help with Specific Care Tasks among Older People Living in their Own Home. National Trends over Two Decades

Sweden is seen as a typical example of a social democratic welfare regime, with universal and generous welfare policies. However, in the last decades, there have been substantial reductions in the Swedish provision of care for older people. This study aimed to examine trends in sources of care-receipt in older people (77+) living in their own home and with a perceived need for help with two specific tasks: house cleaning and/or food shopping. Trends in care-receipt were examined in relation to gender, living alone, having children and socio-economic position. Data from the 1992, 2002 and 2011 data collection waves of the national study, Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD), were used. Response rates varied between 86 and 95 per cent, and the sample represents the population well. Trends and differences between groups were explored in bivariate and logistic regression analyses. There was a reduction in formal care-receipt regarding house cleaning and food shopping over the study period. It was more common for women than men to receive formal care, and more common for men than women to receive informal care. Reductions in formal care have affected older women more than older men. Still, living alone was the most influential factor in care-receipt, associated with a greater likelihood of formal care-receipt and a lower likelihood of informal care-receipt. It can be concluded that public responsibility for care is becoming more narrowly defined in Sweden, and that more responsibility for care is placed on persons in need of care and their families.

Access source material through DOI

Formal and informal long-term care in the community: interlocking or incoherent systems?

Help with activities of daily living for people in the community is provided through formal services (public and private) and informal (often unpaid) care. This paper investigates how these systems interlock and who is at risk of unmet need. It begins by mapping differences between OECD countries in the balance between formal and informal care, before giving a detailed breakdown for the UK. New analysis of UK Family Resources Survey data for 2012/13 and 2013/14 suggests high levels of unmet need. Who receives formal and informal care, and who receives neither, among the working-age and older populations were investigated. Findings: while informal care fills some gaps left by the lack of availability of formal services (and vice versa), not all older or working-age disabled people are protected in these ways. Adults living alone and those with high but not the highest levels of difficulty are most likely to have unmet need. Means-tested public entitlements ameliorate but do not remove the increased risk among people in low-income households. The paper concludes that public policy needs to integrate its support for formal and informal modes of care, with particular attention to those groups most at risk of unmet need.

Access source material through DOI

Exploring the potential for family carers to support people with mental illness to stop smoking

Cigarette smoking poses significant health burdens for people with mental illness. They die sooner than they should, and smoking is a major contributor to their high rates of morbid chronic physical health conditions and early mortality, compared to the general population. Family carers provide important support to people with mental illness. However, family carers' perspectives of smoking by their family members with mental illness are largely absent from the research literature and from practice, despite smoking rates remaining high and quit rates remaining low for this population. Little is known about how family carers are or could be involved in supporting people with mental illness who smoke to stop smoking. This paper aims to provide a discussion of the opportunities for family carers to support their family member's smoking cessation and a discussion of our preliminary research on this topic. From the available literature, it appears that family carers are well placed to support smoking cessation for this population; however, they struggled physically, philosophically, and emotionally with perceived responsibilities involving their family member's smoking and the caring role. They felt isolated and asserted that there was limited support from service providers to assist them. The authors concluded that family carers are important agents within the person's immediate environment who could help them to improve their smoking cessation success. This suggests also that mental health services and other health service providers could benefit from including family carers in their efforts to support smoking cessation for people with mental illness who smoke.

Access source material through DOI

A systematic review of questionnaires used to measure the time spent on family care for frail older people

Time spent on family care of frail older people is difficult to substantiate because of its complex nature. The aim of this study is to check the content validity of existing questionnaires measuring the time spent on caring. Comparing the activities mentioned in the questionnaires with those from other data sources (three validated scales measuring the functional limitations in day-to-day activities and a qualitative study) enabled identification of important drawbacks in the questionnaires reviewed. A comprehensive list of activities was built in order to help future researchers to conduct effective data collection and thereby enable an in-depth analysis of family care supply.

Access source material through DOI

A National Profile Of End-Of-Life Caregiving In The United States

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.

Access source material through DOI

Suddenly, You're a Caregiver

[...]parties, including health-care providers, government agencies, care facilities, and financial institutions, may expect or require that your legal authority to make decisions or provide consent be based on more than being a concerned and loving caregiver. The Social Security Administration can give limited decision authority over Social Security benefits through the title of representative payee. [...]there are frequently many misunderstandings about the basics of this arrangement: * You can't get a power of attorney over someone; it has to be given to you. * The person giving the power of attorney (the principal) must have the legal capacity to understand the authority being delegated. * Agents have the authority to do only those things that are given to them. * Agents must make decisions the way the principal wants, not the way they would do for themselves. A power of attorney could include the authority, for instance, to manage investments, pay bills, collect debts, file lawsuits, sell real estate, negotiate with insurance companies, sell a home or a car, access bank accounts, sign income tax returns, apply for public benefits, or make gifts to charities. To sort out Part A (hospital), Part ? (medical insurance), Part C (Medicare Advantage plans) and Part D (prescription drugs, also called Extra Help), go to www.medicare.gov. Social Security--Your elderly parent may qualify for Extra Help with Medicare prescription drug costs or Supplemental Security income through Social Security. Some states have a program that allows family members to be paid as family caregivers to help...

Original source (some source materials require subscription or permission to access)

Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Purpose Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain. Methods Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales. Results Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden. Conclusions Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.

Access source material through DOI

The Relationship Between Family Caregiving and the Mental Health of Emerging Young Adult Caregivers

Caring for dependent relatives has become a normative challenge for families in the USA and throughout the world. The study objective was to examine the relationship of family caregiving responsibilities and the mental health and well-being of individuals, ages 18–24 years, referred to as emerging young adults. It was hypothesized that young adult caregivers with past and present responsibilities would report significantly more symptoms of depression and anxiety, have lower self-esteem, and use less adaptive coping styles than non-caregiving peers. The sample consisted of 353 undergraduates (81 past caregivers, 76 current/past caregivers, and 196 non-caregivers). Caregivers were also evaluated in terms of care recipients, duration of caregiving, tasks, and hours of effort. Caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers. Research to clarify how caregiving interacts with other stressors in emerging young adults and influences behavioral health should be a priority.

Access source material through DOI

Why employers need to offer benefits to informal caregivers

[...]23% of employees are spending 41 hours or longer each week caring for a relative, according to a new report from the Northeast Business Group on Health. [...]65% of the insurance company’s employees or their relatives using the service received a changed diagnosis. While more than three in five workers in the United States are covered by the Family Medical Leave Act, which guarantees up to 12 weeks of unpaid leave, it isn’t possible for most caregivers to lose their salary. Other companies offer paid family leave that employees can use for maternity and paternity leave, or for taking care of a sick or disabled parent, spouse or child.

Original source (some source materials require subscription or permission to access)

A Caregiver's Medication Misadventure

For Mom's valve replacement surgery, family members kept track of medications and tests while she was in the hospital. Drug therapies are involved in nearly three in four doctors' visits, more than 80% of hospital emergency department visits, and almost 73% of hospital outpatient visits. Policies that facilitate information sharing, engage pharmacists as care-team members, and align resources accordingly are needed to bridge the gaps in care transitions and address the human and economic costs associated with poor medication management.

Original source (some source materials require subscription or permission to access)

Psychometric properties and relations with coping and family strain of the Health Services and Caregiver Experience questionnaire (HSCE): an outcome measure of informal caregivers experience for inpatient care in Italy

Background In the last decade, the number of patients supported by informal caregivers has substantially increased. In the Italian healthcare context, informal caregivers’ experience of care is a new under-recognized construct, and no assessment tool is available. Measuring caregivers’ experience is important since in Italy the relationship between doctors and patients/relatives is still considered asymmetrical. The current study presented development and initial psychometric properties of the Health Services and Caregiver Experience questionnaire (HSCE), a self-report tool of caregivers’ global experience for inpatient clinical care, including factor structure, reliability and its relations with measures of coping strategies and family strain. Methods The HSCE was administered to a total of 503 informal caregivers of inpatients admitted at an Italian University Hospital (mean age = 48.08 years, SD = 14.82, females = 61.40%). Family Strain Questionnaire-Short Form (FSQ-SF) and Coping Orientations to Problems Experience-New Italian Version (COPE-NVI) were administered to a subgroup of participants. First-grade relatives were 73.10%, whereas 13.20% were second-grade relatives and 13.70% were home-watch caregivers. Results Exploratory and confirmatory factor analyses showed a structure with a single factor, which explained 64.80% of the total variance. All the items had salient loadings. In the two subsamples, HSCE had excellent internal consistency (Cronbach’s alpha = 0.95-0.97). Positive moderate correlations were found between HSCE and FSQ-SF scores (r = 0.45, p < .05), between HSCE and COPE-NVI scale scores, including COPE-NVI positive attitude and COPE-NVI problem solving scores (rs’ range = 0.51-0.57, p < .05). Moreover, a positive large correlation between HSCE and COPE-NVI social support scores emerged (r = 0.72, p < .05). Correlations were not significant between HSCE scores and COPE-NVI turning to religion and avoidance strategies. Conclusions The HSCE resulted to have good psychometric properties. Better caregivers’ experience correlated with stronger family strain but also with better problem solving and social support. The study expanded knowledge on caregiver’s experience in Italy and indicated that HSCE is a valid and reliable tool to measure this under-recognized construct in Italy.

Access source material through DOI

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

Context. Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. Objectives. To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home. Methods. This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles. Results. Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support. Conclusion. As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Access source material through DOI

How family caregivers of cancer patients manage symptoms at home: A systematic review

Introduction Cancer affects not only the patient, but also the whole family, especially when a member of the family assumes the role of the family caregiver. This puts an additional emotional, social and financial strain on the family caregivers. Family caregivers of cancer patients are actively involved in the care provided at the home setting through various ways including practical tasks, symptom management and care coordination. The focus of preceding studies on family caregivers and symptom management was either on pain or the patients’ and family caregivers’ experience of symptom management and coping. The aim of this review was to provide evidence on how family caregivers manage symptoms and side effects at home, in adult cancer patients throughout the disease trajectory. Methods A systematic literature review was performed in PubMed, CINAHL, Web of Science and the Cochrane Central Register of Controlled Trials with a combination of keywords and MeSH terms for family caregivers, cancer, symptoms, side effects and management. Based on predetermined inclusion and exclusion criteria, a total of 1270 articles were screened and 20 studies were included in the analysis. A descriptive analysis was performed due to the heterogeneity of the findings. Results The results showed that only a limited number of studies (3/20) explored how and what family caregivers do in symptom management as a primary outcome. Family caregivers provided psychosocial support, such as supporting and motivating the patient and maintaining social engagement. Caregivers provided physical support such as with the administration of medicine and tube feeding. As an integral part of managing the symptoms, family caregivers actively monitored and assessed symptoms to timely recognize any treatment related side effects, assess the response to therapeutic interventions and recognize possible deterioration in physical status. Furthermore, family caregivers were often the decision maker – being alert, watching and waiting and decided when to act and when not to act. Conclusions Family caregivers are doing work similar to healthcare professionals, when managing symptoms and side effects at home in patients with cancer. Advanced tasks such as assessing, monitoring and deciding when and how to act are included in the daily routine of family caregivers.

Access source material through DOI

An integrative review on family caregivers' involvement in care of home-dwelling elderly

Often family members provide care-giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care-giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long-term care facilities that family members prefer to be involved in decision-making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs' involvement in home-care settings from the FCs' perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs' caring for home-dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty-six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included "relationship building with professionals," "negotiating with professional care," "being professionally supported," and "managing role expectations and knowledge sharing". The fifth theme, "working together" described the mutual care for the care recipient. Although the first four themes were consistent with a pre-existing conceptual model by Sims-Gould and Marin-Matthews (2010), the fifth required an expansion of the model with an additional contribution "collaborative practice". The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.

Access source material through DOI

Relationship continuity and person-centred care in how spouses make sense of challenging care needs

Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim. Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories.  Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions. Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

Access source material through DOI

Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond

...this paper explores:

  • Insights into the role and experience of carers in different national contexts
  • Good practice examples of services, organisations and approaches which have sought to improve support to the carers of people with dementia
  • Policy and practice recommendations for key stakeholders such as policy makers, welfare services and employers

Given the traditional focus of Walgreens Boots in the US and the UK (and given very different policy contexts and welfare mixes), the review focuses on these two countries, with additional insights from other countries prominent in the literature and representing different welfare regimes. After searching the literature and following dialogue with UK and US respondents, this includes:

  • Norway (as an example of developments in a Scandinavian system with a comprehensive welfare state, an emphasis on maximising labour market participation and a commitment to gender equality)
  • Australia (as an example of an Australasian country with strong links to the UK)
  • South Africa (as an example of an African country with a younger population but a growing recognition of future needs as the population ages, as well as challenges with HIV-associated dementia)

Throughout the paper, there is an overarching question about the extent to which different countries are ready for the implications of the demographic changes they face, and there are regular textboxes which pose questions to government, to employers, to health and social care, and to broader society to help them reflect on key themes.

Original source (some source materials require subscription or permission to access)

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

Access source material through DOI

A Qualitative Exploratory Study of Informal Carers’ Experiences of Identifying and Managing Oral Pain and Discomfort in Community-Dwelling Older People Living with Dementia

Increased prevalence of dementia and poor oral health in older people is associated with more people living with dementia who experience oral pain and discomfort. However, little is known about how informal carers manage oral pain for people living with dementia in the community. This study aimed to explore informal carers' experiences of identifying and managing oral pain and discomfort in people living with dementia, and barriers and enablers they encountered. Focus groups with informal carers of people living with dementia were conducted, transcribed verbatim, and analysed using thematic analysis. Carers' accounts suggested that day-to-day contact was required to identify oral pain and discomfort, and a symptomology of the signs and symptoms was developed. Carers' accounts also highlighted issues in maintaining oral health, difficulties in accessing the mouth, managing dentures, competing demands, and difficulties in accessing treatment due to health service-, behavioural- and treatment- related barriers. Enablers included informal carers' pivotal role in the identifying and managing oral pain and discomfort in people living with dementia. The study concludes that carers want more partnership work with dental professionals, and clearer care pathways are required to meet the oral health needs of people living with dementia who experience oral pain.

Access source material through DOI

Medication administration by caregiving youth: An inside look at how adolescents manage medications for family members

Introduction: Children take on the role of family caregiver throughout the world. No prior published research exists surrounding the particular circumstances of the task of medication administration and management by these youth, which was explored in this study. Methods: A series of focus groups were conducted using semi-structured interviews of 28 previously identified caregiving youth ages 12–19 years old who live in the United States. Data analysis followed guidelines of conventional content analysis. Results: The following categories emerged about youth caregivers handling medications: 1) tasks involve organizational and administrative responsibilities; 2) youth have varying degrees of knowledge pertaining to these medications; 3) most share responsibility with other family members; 4) they lack formal education about their responsibilities; 5) multiple challenges exist relating to this task; 6) managing medications is associated with emotional responses; and 7) possible safety issues exist. Conclusions: These responsibilities represent a unique hardship and merit support and research from the medical, healthcare, legislative, and public health communities, among others.

Access source material through DOI

The start of caring for an elderly dependent family member: a qualitative metasynthesis

Background: The family often takes care of an elderly person who suddenly becomes dependent. This greatly affects different aspects of the caregivers’ lives. The aim of this study is to explore the initial experiences, during the first year of care, of persons who suddenly become caregivers for elderly dependent relatives. Methods: A search in CINAHL, PsycINFO, WOS, Medline, and Scopus and a metasynthesis of qualitative research were conducted including 19 articles. Results: Three categories were developed to explain the process of becoming a caregiver ‘taking on the role’ (life changes, uncertainty and confusion, and acceptance or resistance); ‘beginning to realise’ (new needs, impact, and appraisal); and ‘implementing strategies’ (seeking help and self-learning, reordering family and social relationships, solving problems, and devising strategies to decrease negative emotions and stress). Conclusions: The synthesis provides a comprehensive understanding of the experience of becoming a caregiver in order to help health-care professionals to adapt care plans to this situation.

Access source material through DOI

"Something that happens at home and stays at home": An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.

Access source material through DOI

Holding Up More Than Half the Sky

In recognition of the contributions that women made to Chinese society, Mao Zedong said that “women hold up half the sky.” In my family of origin, I am 1 of 5 children. Our ages range from mid-70s to early 60s. On Mother’s Day 2017 our mother “went home” following 2 years of steady decline. Mom lived on her own for 34 years, and she did quite well managing her affairs, keeping house, and visiting her children who were scattered around the country. But failing eyesight, hearing loss, and an inability to maintain personal hygiene and adequate nutrition and hydration began to take hold.

Access source material through DOI

Medicines management issues in dementia and coping strategies used by people living with dementia and family carers: A systematic review

Objectives: Medicines play a key role in the lives of people with dementia, primarily to manage symptoms. Managing medicines is complex for people with dementia and their family carers and can result in multiple problems leading to harm. We conducted a systematic review to identify and model medication issues experienced and coping strategies used by people with dementia and/or family carers. Methods: Eleven general databases and four systematic review databases were searched. Studies were quality assessed using an established framework and thematically analysed. Results: Twenty‐one articles were included in this study, and four domains affecting medication use were identified: cognitive, medication, social and cultural, and knowledge/educational and communication. People with dementia reported medication issues in all four domains, but few coping strategies were developed. Family carers reported issues and coping strategies related to the medication and knowledge/educational and communication domains. Common issues with regards to knowledge and communication about medicines remain unresolved. The “voices” of people with dementia appeared largely missing from the literature so were in‐depth understanding of how, whether, and in which circumstances coping strategies work in managing medicines. Conclusions: Medicines management is a complex set of activities and although current coping strategies exists, these were primarily used by family carers or the person with dementia‐carer dyad. Health and social care practitioners and researchers should seek to understand in‐depth the “mechanisms of action” of existing coping strategies and actively involve people with dementia as co‐producers of knowledge to underpin any further work on medicines management.

Access source material through DOI

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

Access source material through DOI

A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia

Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. Design Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. Settings and participants Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.

Access source material through DOI

Characteristics associated with family money management for persons with psychiatric disorders

Background: Persons with psychiatric disorders (PD) commonly have their money officially or unofficially managed by others, with money managers most commonly being family members. Aims: (i) Identify characteristics of persons with PD, adult family members, and interactions with each other significantly associated with family money management (FMM). (ii) Identify significant differences in aforementioned characteristics between official versus unofficial FMM. Methods: Five hundred and seventy-three adults residing in USA with an adult relative with PD completed a survey. Results: Among persons with PD, FMM was positively associated with lower income, diagnosis of schizophrenia/schizoaffective or bipolar disorder, psychiatric hospitalization, and arrest history. FMM was negatively associated with family members having a mental health diagnosis. FMM was positively associated with interaction characteristics of co-residence, financial assistance, caregiving, and use of limit-setting practices. Compared to official FMM, when unofficial FMM was present, persons with PD were less likely to have been psychiatrically hospitalized or to have regularly attended mental health treatment. When unofficial FMM was present, adult family members were less likely to be a parent of the person with PD. Conclusions: Practitioners should assess the level of burden experienced by family money managers and assess and address with family money managers the use of limit-setting practices.

Access source material through DOI

Experiences of family caregivers the first six months after patient diagnosis of necrotising soft tissue infection: A thematic analysis

Background Necrotising soft tissue infection, or necrotising fasciitis, is a rapidly progressing disease requiring immediate diagnosis and treatment consisting of antimicrobial therapy, hyperbaric oxygen, debridement surgery and treatment in the intensive care unit. The harrowing illness trajectory affects the family caregivers potentially producing long-term psychological issues.Objectives We aimed to explore the experiences and coping strategies of family caregivers during the first six months after patient diagnosis of necrotising soft tissue infection. Methods Our study had a prospective, explorative, qualitative design using semi-structured interviews and thematic analysis to understand necrotising soft tissue infection as an intrinsic and instrumental case. Family caregivers (n = 25) were recruited at three university hospitals in Denmark and Sweden. Findings We identified three chronological themes describing issues of importance to the family caregivers. In the intensive care unit: Coping with illness and intensive care; In the ward: Coping with injury and post-intensive care and At home: Coping with recovery and new home life. Conclusion Challenges facing family caregivers of necrotising soft tissue infections survivors are still under-recognised. Healthcare professionals need to ensure that families and stakeholders throughout the patient trajectory have access to and co-create timely information and care plans to bridge the knowledge gap across care environments and to relieve family responsibility.

Access source material through DOI

The moderating role of the amount of caregiving tasks on the relationships between dementia caregivers’ characteristics and outcomes

Aim This study identified the moderating role of the amount of caregiving tasks on relationships between dementia family caregivers’ characteristics (age, education, etc.) and outcomes (burden, etc.). Design A cross‐sectional analysis of surveyed data. Method A convenience sample of 369 family caregivers (151 males, 218 females) aged 20 years or older was recruited from 10 cities in the southern area of South Korea. Data were collected from November–December 2011. Measures of caregiver burden, perceived health status and emotional distress of caregivers related to the memory‐behaviour problems of the care recipient were used to assess the outcomes of family caregivers of older adults with dementia. Results The amount of caregiving tasks has a moderating effect on the relationships between caregivers’ characteristics (such as living with the recipient and duration of caregiving) and the caregiver burden. The interaction between the amount of caregiving tasks and status of living with recipient was significant in relation to the emotional distress of caregivers related to the memory‐behaviour problems of the care recipient with dementia; however, there was no effect of the amount of caregiving tasks on the relationships between caregivers’ characteristics and perceived health status. Conclusion The amount of caregiving tasks can have a moderating role in the caregiving stress model. Intervention programs need to be developed and implemented to reduce negative outcomes of family caregivers, particularly those living with older adults with dementia.

Access source material through DOI

Children with ill parents: extent and nature of caring activities

Rationale Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. Aims and objectives This study examined the extent and nature of caring activities done by patients’ children; differences in caring activities between different types of parental illness; factors associated with caring activities. Design An explorative cross‐sectional multicentre study. Methods Parents as patients in specialised healthcare services, and their children, were recruited from five health trusts in Norway. The sample included 246 children aged 8–17 years and their 238 parents with severe physical illness (neurological disease or cancer) (n = 135), mental illness (n = 75) or substance abuse (n = 28). Main outcome measure Multidimensional Assessment of Caring Activities (MACA‐YC18). Results A large number of children with ill parents are performing various caring activities. Increased caring activities among children due to their parent's illness were confirmed by their parents, especially with regard to personal care. We found no significant differences in the extent of caring activities between illness types, but there were some differences in the nature of these activities. Factors significantly associated with the extent and nature of caring activities were as follows: better social skills and higher external locus of control among the children and poorer physical parental health. Parent's access to home‐based services was limited. Study limitations In recruitment of participants for the study, a sampling bias may have occurred. Conclusion To promote coping and to prevent inappropriate or extensive caring activities among children with ill parents, there is a need for increased access to flexible home‐based services adapted to the type of parental illness.

Access source material through DOI

Extraordinary normalcy: Home, relationships and identities in narratives of unpaid care

Based on audio diaries and narrative interviews with family carers, this paper suggests care can be understood as an experience of ‘extraordinary normalcy’, meaning that profound shifts in home, relationships and identities take place whilst caring, yet these become part of the normalcy of family life. To maintain and understand a sense of normalcy, our participants utilise professional and technological interventions in the home and draw on notions of responsibility, reciprocity and role-reversal as frameworks for explaining why they continue to care, despite the challenges it brings. The paper considers how domestic activities performed in the home can both highlight the extraordinary aspects of care and help maintain the normalcy of the everyday. Extraordinary normalcy is a concept that problematises definitions of care that remove it from the relational and everyday, yet acknowledges the challenges people face when performing care. This paper contributes to a call for a narrative based development of social policy and makes recommendations for policy and practice based on the in-depth accounts of family carers.

Access source material through DOI

Partners of Individuals with Borderline Personality Disorder: A Systematic Review of the Literature Examining Their Experiences and the Supports Available to Them

Over a third of individuals with borderline personality disorder (BPD) are in long-term romantic partnerships, yet little is known about the experiences of their partners. Because difficulties in interpersonal relationships are a hallmark of BPD, it is especially important to understand the support needs of their romantic partners. This systematic review investigates the experiences of romantic partners of adult individuals with BPD and the interventions designed to support them. Twenty-two articles were found, 13 of which pertained to partner experiences and 9 to interventions. Thematic analysis was used to identify three main themes in the descriptions of partners' experiences: emotional challenges, dual roles as both a romantic partner and parental/therapeutic figure, and lack of control. The available interventions, which consisted of educational and skills-based programs with limited efficacy data, addressed only a small portion of the subthemes identified in the literature describing partners' experiences. The discrepancy between the needs identified in the partner-experience literature and the interventions available suggests a need to develop and evaluate more partner-oriented programming. Such programming should use psychoeducation, peer support, and individual- and relationship-based skills development to address and therefore improve the experiences of partners of individuals with BPD.

Access source material through DOI

Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes

Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers, (c) classification of specific activities caregivers perform for cancer patients, (d) identification of caregiver characteristics associated with specific care activities, (e) inconsistencies in measurement of care activities, and (f) minimal reporting of outcome variables.

Access source material through DOI

Providing care for a person with late-stage dementia at home: What are carers' experiences?

Background It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief (2) Parenting the parent (3) Seeking support (4) Death, dying and life after death. Conclusion Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.

Access source material through DOI

Informal caregiving in head and neck cancer: caregiving activities and psychological well-being

The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1–19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC‐specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck‐specific care tasks was a significant predictor of experiencing depression and anxiety.

Access source material through DOI

Crossing a Line: A narrative of risk-taking by older women serving as caregivers

Background :Caregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers. Aim: To explore the everyday experiences of older adults serving as primary informal caregivers to significant others. Methods: A process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative. Results: These caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative. Conclusion and significance: The everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.

Access source material through DOI

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists

Background To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. Patients and Methods A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Results Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003) oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). Conclusions Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.

Access source material through DOI

Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process

Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required. 

Access source material through DOI

Caring at home until death: enabled determination

Purpose: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. Method: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. Results: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. Conclusions: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

Access source material through DOI

Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services

WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.

Access source material through DOI

Exploring partners' perspectives on participation in heart failure home care: a mixed-method design

Aim. To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. Background. Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. Design. A convergent parallel mixed-method design was used, including data from interviews and questionnaires. Methods. A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. Results. Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. Conclusion. The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation. 

Access source material through DOI

Variances in family carers' quality of life based on selected relationship and caregiving indicators: A quantitative secondary analysis

Aims and objectives: To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Background: Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well‐being. However, factors that constitute family carers' experience and explain variances are less well understood. Design: A secondary data analysis using cross‐sectional data from a controlled randomised trial with community‐dwelling people 80 years or older and their families. Methods: A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two‐step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Results: Two family carer groups were identified. The low‐intensity caregiver group (57% of carers) reported high relationship quality and self‐perceived ease of caregiving. In contrast, the high‐intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self‐perceived health compared to the low‐intensity caregiver group. Conclusions: A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Implications for practice: Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship.

Access source material through DOI

Striving for balance between caring and restraint: young adults' experiences with parental multiple sclerosis

Aims and objectives To explore and describe how young adults between 18-25 years of age experienced growing up with a parent with multiple sclerosis and how these experiences continue to influence their daily lives. Background Chronic parental illness is occurring in about 10% of families worldwide, but little is known about how the children experience growing up with a parent with multiple sclerosis during their childhood and into young adulthood. Design We chose a qualitative design using a phenomenological approach based on Giorgi. Methods Exploratory and open-ended interviews with 14 young adults were conducted. Results The essence of the phenomenon of having a parent with multiple sclerosis was synthesized into 'Striving for balance between caring and restraint' from two themes 'caring' and 'restraint' and eight subthemes. Participants' experiences of caring for parents with multiple sclerosis continued influencing their other close relationships, in which they tended to assume responsibility while concealing some of their feelings and desires. Most participants showed restraint among parents with and without multiple sclerosis, friends and partners. Conclusion It seems that one of the greatest challenges of having a parent with multiple sclerosis is achieving a balance between caring for others and asserting one's own desires. Relevance to clinical practice Healthcare professionals can support the family by encouraging family members to participate in consultations and to assist the parents in providing information about multiple sclerosis and its symptoms to the children. Parents might need assistance in applying for help with domestic chores or referrals to support groups for their children or other family members. 

Access source material through DOI

Family Caregiving in Critical Illness: Research Opportunities and Considerations

Family caregivers provide essential support, information, and surrogate decision making for critically ill patients and are recognized as important care partners with the clinical team in the intensive care unit (ICU). Unfortunately, many family members who assume a caregiving role during critical illness also experience the detrimental effects of this stressful life event. 

This is an exciting time for family caregiver research and nursing research leadership in the ICU. Nursing acknowledges the importance of families and has led research in family-centered care. The needs of critically ill patients and their families are enormous and adequately tested interventions to improve outcomes and health are few. Research led by nurses can improve lives of ICU patients and their families.

Access source material through DOI

A phenomenological construct of caring among spouses following acute coronary syndrome

The aim of this study was interpret the existential construct of family caring following Acute Coronary Syndrome. Family support is known to have a positive impact on recovery and adjustment after cardiac events. Few studies provide philosophically-based, interpretative explorations of carer experience following a spouse's ischaemic event. As carer experiences, behaviours and meaning-making may impact on the quality of the support they provide to patients, further understanding could improve both patient outcomes and family experience. Fourteen spouses of people experiencing Acute Coronary Syndrome in Sydney, Australia were engaged in a single, semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Data were analysed using hermeneutic interpretation within a Heideggerian phenomenological framework. Acute Coronary Syndrome disrupts lived temporality, and the projected potential for carers' being-alongside. Carers experienced an existential uncertainty that arose from difficulty in diagnosis, and situated fear as an attuned, being-towards-death. They constructed protective strategies to insulate their partner and themselves from further stress and risk, however, unclear boundaries for protection heightened carer anxiety. The existential structure of care included one of two possible Heideggerian modes: leaping-in care was a dominating mode that required a high level of carer vigilance leaping-ahead care was a metaphorical walking alongside, as carers gave back control, freeing opportunities for the person to 'own' care. Supporting carers through the intensive phase of leaping-in care, and equipping them for informed leaping-ahead care should be a focus in both the acute and post-discharge care phases.

Access source material through DOI

Supporting the critical role of family carers in wellness management

Aging populations, the increased prevalence of chronic disease, and spiraling healthcare costs have led to calls for policy and technology that focuses on wellness management, preventative interventions, and decentralized healthcare. This has prompted several initiatives aimed at empowering individuals to proactively manage their wellness, including employee wellness programmes, step-tracking mobile apps, etc. However, a critical actor in this proposed new healthcare model is the family carer. These individuals are charged with managing outpatients’ wellness, tracking deteriorations, providing support, and even administering routine care in order to minimize and/or delay the need for further clinical intervention. Yet for most people, ‘wellness’ is a poorly understood and ambiguously measured concept. Hence, family carers are often asked to rely upon personal discretion to perform their duties. This paper uses a qualitative case study based on a series of semi-structured interviews to explore how family carers manage this responsibility, the support available to them (technologically and socially), and the challenges they face. It is informed by a research model which combines activity theory and attribute substitution theory in order to make sense of how the diverse actors involved in wellness management (e.g. the family carers, the patients, other family members, clinical/non-clinical healthcare workers) communicate and coordinate. Findings suggest family carers’ role in managing outpatient wellness is hindered by their inability to gather/share key wellness-related information with others involved. The study concludes by calling for better technological infrastructure linking carers with clinical professionals and more standardized information channels between various stakeholders in the caring activity.

  • Illustrates the social and technological complexity of wellness management activities
  • Shows lack of ‘access to’ and ‘sharing of’ wellness related information in such activities
  • Demonstrates the need for development of new ICTs to better support family carers
Access source material through DOI

Consistency of dementia caregiver intervention classification: an evidence-based synthesis

Background: There are many systematic reviews and meta-analyses (SRs) of interventions for family caregivers of persons with Alzheimer's disease or a related dementia. A challenge when synthesizing the efficacy of dementia caregiver interventions is the potential discrepancy in how they are categorized. The objective of this study was to systematically examine inconsistencies in how dementia caregiver interventions are classified. Methods: We searched Ovid Medline®, Ovid PsycINFO®, Ovid Embase®, and the Cochrane Library to identify previous SRs published and indexed in bibliographic databases through January 2015. Following a graphical network analysis, open-coding of classification definitions was conducted. A descriptive analysis was then completed to examine classification consistency of individual interventions across SR grouping labels. Results: Twenty-three SRs were identified. A graphical network analysis revealed a significant amount of overlap in individual studies included across SRs, but stark differences in how reviews labeled or categorized them. The qualitative content analysis identified seven themes; one of these, content of the intervention, was used to compare classification consistency. When subjecting the classification of interventions to descriptive empirical analysis, extensive inconsistency was apparent. Conclusions: The substantial inconsistency in how dementia caregiver interventions are classified across SRs has hindered the science and practice of dementia caregiver interventions. Specifically, accurate reporting of intervention components and SRs would allow for more precise assessments of efficacy as well as a fuller determination of how caregiver interventions can best yield benefits for caregivers and persons with dementia.

Access source material through DOI

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia. Methods Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data. Results Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity. Discussion Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

Access source material through DOI

Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control family caregivers' knowledge, skills, and self-efficacy in pain management and family caregivers' concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples. 

Access source material through DOI

Patient safety in community dementia services: what can we learn from the experiences of caregivers and healthcare professionals?

Objectives: this study aims to explore how patient safety in community dementia services is understood by caregivers, and healthcare professionals. Methods: cross-sectional analysis of guided one-to-one interviews with 10 caregivers, and 10 healthcare professionals. Results: caregivers and healthcare professionals identified a range of issues including medication errors, mis-communication between professionals, unclear service pathways and the effects of stress on caregivers’ behaviour. Caregivers and professionals differed in their attitudes to balancing safety with patient autonomy and who is responsible for managing safety. Conclusions: this article helps to define the nature of safety issues in the context of community care for people with dementia. In contrast to hospital medicine, where the ideal treatment world is safe with all risks managed or minimised, in dementia some risks are actively taken in the interests of promoting autonomy. Caregivers’ views differ from those of health professionals but both parties see potential for collaborative working to manage risk in this context, balancing the promotion of autonomy with the minimisation of potential harm.

Access source material through DOI

Formal and informal care of community-living older people: A population-based study from the Swedish National study on Aging and Care

Objectives: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). Design: Cross-sectional, population based cohort. Setting: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County. Participants: 3,338 persons ≥72 years. Measurements: Patterns and amounts of informal and formal care by cognition and area of residence. Results: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. Conclusions: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

Access source material through DOI

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel (ii) previous experiences of informal care‐giving and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.

Access source material through DOI

Addressing the Challenges of Aging: How Elders and Their Care Partners Seek Information

Purpose: Elders in retirement communities face many challenges concerning information and communication. We know little about whether or how online technologies help meet their medical and social needs. The objective of this study was to gain insights into how these elders and their families manage health information and communication. Design and Methods: Qualitative analysis of 10 focus groups with elders and family members. Participants were 30 elders at least 75 years of age residing in 5 senior living communities in and near Boston, MA, and 23 family members. Results: Elders and families turned first to their personal networks when they needed information or help. They stayed informed about elders’ health primarily by talking directly with providers. They used online resources infrequently, including portal access to medical records. They wanted online access to medication lists and visit notes, up-to-date information about local services and social activities, and a way to avoid the overwhelming nature of Internet searches. Implications: Elders in senior living communities and their families piece together information primarily from word of mouth communication. In the future, electronic social and collaborative technologies may make information gathering easier.

Access source material through DOI

“Ensure that you are well aware of the risks you are taking…”: actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety

Background When seeking care at international hospitals and clinics, medical tourists are often accompanied by family members, friends, or other caregivers. Such caregiver-companions assume a variety of roles and responsibilities and typically offer physical assistance, provide emotional support, and aid in decision-making and record keeping as medical tourists navigate unfamiliar environments. While traveling abroad, medical tourists’ caregiver-companions can find themselves confronted with challenging communication barriers, financial pressures, emotional strain, and unsafe environments. Methods To better understand what actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety, 20 interviews were conducted with Canadians who had experienced accompanying a medical tourist to an international health care facility for surgery. Interview transcripts were subsequently used to identify inductive and deductive themes central to the advice research participants offered to prospective caregiver-companions. Results Advice offered to future caregiver-companions spanned the following actions and activities to protect health and safety: become an informed health care consumer assess and avoid exposure to identifiable risks anticipate the care needs of medical tourists and thereby attempt to guard against caregiver burden become familiar with important logistics related to travel and anticipated recovery timelines and take practical measures to protect one’s own health. Conclusion Given that a key feature of public health is to use research findings to develop interventions and policies intended to promote health and reduce risks to individuals and populations, the paper draws upon major points of advice offered by study participants to take the first steps toward the development of an informational intervention designed specifically for the health and safety needs of medical tourists’ caregiver companions. While additional research is required to finalize the content and form of such an intervention, this study provides insight into what practical advice former caregiver-companions state should be shared with individuals considering assuming these roles and responsibilities in the future. In addition, this research draws attention to the importance of ensuring that such an intervention is web-based and readily accessible by prospective caregiver-companions.

Access source material through DOI

The influence of day care centres designed for people with dementia on family caregivers - a qualitative study

Background: Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. Methods: This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Results: Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia’s needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. Conclusions: DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver’s motivation and ability to care and postponing the need for nursing home placement.

Access source material through DOI

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

Access source material through DOI

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults in the United States. Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants: Community‐dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self‐care, household activities, transportation, or medical tasks. Measurements: Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results: Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion: Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health‐related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.

Access source material through DOI

Family caregiver's experiences of providing care to patients with End-Stage Renal Disease in South-West Nigeria

Aims and objectives: To describe the experiences of family caregivers providing care for patients living with End‐Stage Renal Disease in Nigeria Background: Family caregiving is where an unpaid volunteer, usually a close family member, attends to the needs of a loved one with a chronic, disabling illness within the home. Much research has been conducted in the area of family caregiving in high‐income countries. However, the same cannot be said for many of the low‐resource, multicultural African countries. Design: Qualitative descriptive study. Method: This qualitative descriptive study used manifest content analysis to analyse data from semi‐structured, individual interviews, with 15 purposively selected family caregivers. Two tertiary institutions providing renal care in South‐Western Nigeria: the research setting for this study. Result: Five categories were identified, and these included disconnectedness with self and others, never‐ending burden, ‘a fool being tossed around’, obligation to care and promoting a closer relationship. Conclusion: Experiences associated with the caregiving of patients diagnosed with End‐Stage Renal Disease evoked a number of emotions from the family caregivers, and the study revealed that caregiving imposed some burdens that are specific to low‐resource countries on participants. Relevance to clinical practice: Nurses need to engage family caregivers on disease‐specific teachings that might promote understanding of the disease process and role expectation. Family caregivers may benefit from social support services.

Access source material through DOI

Correlates of caregivers' involvement in the management of older adults' medications

Background Family caregivers are actively involved in medication management, yet little is known about factors associated with caregivers' involvement in this role and how that information can be utilized to engage caregivers in the healthcare system. Objectives To explore factors associated with caregiver involvement in various aspects of older adults' medication management (i.e., ordering, keeping track or ensuring the correct medication is taken at the correct time, and injecting medications). Methods A retrospective analysis of two national surveys, the 2011 National Health and Aging Trends Study and the National Study of Caregiving was performed. Multivariate logistic regression models were used to examine the associations between demographic and caregiving variables with caregiver involvement in three medication management activities. Results Approximately two-thirds of family caregivers (N = 1369) were involved in one or more medication management activities. Factors associated with caregivers' assistance with ordering medications included being female, high frequency of involvement in instrumental activities of daily living (IADLs), involvement in medically-related activities, and caring for an older, less educated, or Hispanic care-recipient and individuals with lung disease or dementia (p < 0.05). Caregiver living arrangement, high frequency of involvement in activities of daily living (ADLs) and IADLs, involvement in medically-related activities along with care-recipient's race/ethnicity and having a dementia diagnosis were all associated with caregiver assistance in keeping track of medications (p < 0.05). Factors associated with assistance in injecting medications were caring for older adults with diabetes or stroke, or being involved in medically-related activities (p < 0.05). Conclusions Different demographic and caregiving factors were associated with caregiver involvement in various medication management activities. Recurring factors included race/ethnicity, certain care-recipient disease states, and caregiver involvement in IADLs and medically-related activities. Healthcare providers can play a proactive role in engaging caregivers in discussion about medication management and these findings can help practitioners more effectively target caregivers for education and support.

Access source material through DOI

The experience of myeloma caregivers during home-based oral chemotherapy treatment: A qualitative study

Objective: The primary aim of this qualitative study was to explore myeloma carers/caregivers experience during outpatient-based oral treatment for patients with multiple myeloma (MM). Data Sources: Literature review. In-depth, open-ended interviews of seven purposively selected caregivers of MM patients in the United Kingdom. Conclusion: Findings showed that carers were involved in practical and emotional caregiving activities, assisting the patient with managing complex oral combination treatments, and monitoring side effects. Care-giving activities continued after treatment, and experiences were described within the context of the MM journey and fear and uncertainty about the future. Caregivers also experienced a range of emotions, which they often kept hidden from the MM patients and other family members. Difficulties balancing caring responsibilities, particularly for those with jobs, were expressed. Implications for Nursing Practice: Nurses need to understand the importance of considering carers' involvement when assessing patients, and the need to address caregivers' continuing support and information needs. Problems navigating health and social care processes should be anticipated, and nurses can direct the carers to appropriate resources to meet their needs.

Access source material through DOI

The Economic and Social Impact of Informal Caregivers at Mulago National Referral Hospital, Kampala, Uganda

Background The severe deficit of health care workers in Uganda necessitates hospitalized patients to be cared for by a relative. These informal caregivers constitute a crucial component of patient care. Mulago Hospital in Kampala, Uganda, is one of the nation's national referral hospitals, receiving very sick patients. Although studies have been conducted on challenges facing informal caregivers in the home setting, no study has addressed the caregiver burden in the hospital setting. Methods A survey of 100 randomly selected informal caregivers was conducted in Mulago Hospital's internal medicine wards to evaluate informal caregivers' demographics, impact on patient care, and challenges. Results Challenges include emotional burdens, lack of sanitation, accommodation, sufficient health workers, finances, and recognition. Recommendations were given to ensure improve informal caregivers' situations. Conclusions Despite hardships, informal caregivers recognize the importance of familial presence, thereby setting a new standard for patient care by recreating the comfort of home care in the hospital. Studying the characteristics of these care givers and more fully delineating the sacrifices they make and the challenges they faced provides the basis for a series of recommendations to hospital management aimed both at improved patient care and care of the informal caregiver.

Access source material through DOI

The ‘wayfinding’ experience of family carers who learn to manage technical health procedures at home: a grounded theory study

Background: With more care taking place in the home, family carers play an important role in supporting patients. Some family carers undertake technical health procedures generally managed by health professionals in hospital settings (e.g. managing a tracheostomy or enteral feeding). Aim: To explore how family carers learn to manage technical health procedures in order to help health professionals better understand and support this process. Design and methods: A grounded theory study using data from interviews with 26 New Zealand family carers who managed technical health procedures including nasogastric or gastrostomy feeding, stoma care, urinary catheterisation, tracheostomy management, intravenous therapy, diabetes management and complex wound dressings. Most (20 participants) were caring for their child and the remaining six for their spouse, parent or grandparent. Following grounded theory methods, each interview was coded soon after completion. Additional data were compared with existing material, and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was developed. Interviewing continued until no new ideas emerged and concepts were well defined. Findings: The core concept of ‘wayfinding’ indicates that the learning process for family carers is active, individualised and multi‐influenced, developing over time as a response to lived experience. Health professional support was concentrated on the initial phase of carers’ training, reducing and becoming more reactive as carers took responsibility for day‐to‐day management. Conclusion: Wayfinding involves self‐navigation by carers, in contrast to patient navigator models which provide continuing professional assistance to patients receiving cancer or chronic care services. Wayfinding by carers raises questions about how carers should be best supported in their initial and ongoing learning as the management of these procedures changes over time.

Access source material through DOI

A Kaleidoscope of Hope: Exploring Experiences of Hope Among Service Users and Informal Carers in Health Care Contexts

Background: There is a large and diverse literature on the concept of hope in health care. This literature covers a broad spectrum of perspectives, from philosophical, conceptual, and theoretical analysis through to attempts at measuring the concept of hope with differing health care users. Aims: To explore the concept of hope through the secondary analysis of existing data sets, with the intention of understanding hope in the context of person-centeredness. Research Question: What is the experience of hope among service users and informal carers in different health care contexts? Method: Secondary analysis of data derived from three research studies. Findings: We identified four key themes that together illustrate what we describe as a kaleidoscope of hope, reinforcing the view that there is no one presentation of hope and that practitioners must engage authentically with service users to determine the most effective and appropriate intervention strategies. Conclusions: Hope is not a singular phenomenon, and in the context of person-centered practice there is a need for practitioners to engage authentically with service users and listen carefully to what may bring hope for them.

Access source material through DOI

End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia

This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution. The results illuminate the therapeutic landscape of community gardens, and contribute new understandings to the fields of PAR, health geography and end-of-life care.

Access source material through DOI

Connecting Those That Care: Designing for Transitioning, Talking, Belonging and Escaping

Care provision in many nations increasingly relies on the work of informal, or non-professional, carers. Often these carers experience substantial disruptions and reductions to their own sociality, weakened social support networks and, ultimately, a heightened risk of social isolation. We describe a qualitative study, comprised of interviews, design workshops and probes, that investigated the social and community support practices of carers. Our findings highlight issues related to becoming and recognising being a carer, and feelings of being ignored by, and isolated from, others. We also note the benefits that sharing between carers can bring, and routes to coping and relaxing from the burdens of care. We conclude with design considerations for facilitating new forms of digitally mediated support that connect those that care, emphasising design qualities related to transitioning, talking, belonging and escaping.

Access source material through DOI

The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007), the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995) and the Barthel Index (Mahoney & Barthel, 1965). Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship) and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy) levels. The main reason for maintaining caregivers was family/personal obligation (95.7%). Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI M = 101.0, SD = 15.0). There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.

Access source material through DOI

Family Members’ Experiences Supporting Adults With Chronic Illness: A National Survey

Introduction: Family and friends often help chronically ill adults manage their conditions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. This study describes key roles and concerns of family members who support the health management of adults with chronic illness, and compares experiences of health supporters living in and outside of support recipients’ homes. Methods: Data were obtained from a national internet survey of 1,722 adults selected to represent the U.S. population. Detailed survey questions were completed by 703 respondents who reported providing regular disease-management help to at least one functionally-independent family member or friend with at least one of five chronic conditions (diabetes, heart failure, chronic lung disease, arthritis, depression). Results: Current supporters assisted 834 chronically ill adults: 257 receiving in-home support and 577 receiving out-of-home support. Current supporters spent 2.1 hours/week on average helping their support recipient with health care, and 21.2% attended their recipient’s health care appointments. Many recipients discussed crucial concerns about medication side effects (47.0%) and trouble paying for medications (32.0%) with supporters. However, 41.0% of supporters reported insufficient information about recipients’ health conditions and regimen to be helpful. In-home supporters reported arguing more often with support recipients, but also received more information from recipients’ health care providers than out-of-home supporters. Discussion: Family and friends have significant potential to influence patients’ chronic illness self-management. Programs to engage chronically ill patients’ families to support self-management could provide information and skills targeting needs identified by supporters.

Access source material through DOI

Sharing Care Responsibilities Between Professionals and Personal Networks in Mental Healthcare: A Plea for Inclusion

This positional paper explores the role of personal networks (family and friends) in caring for people with mental health problems. Since the eighties, major changes have been made in the organization and focus of professional mental healthcare. Correspondingly, new expectations and changes in the division of care responsibilities between people with mental health problems, their personal networks and their professional care providers were created. In this paper, I investigate how the transition in mental healthcare changed the allocation of care responsibilities between personal networks, people with mental health problems and professional caregivers. I will consider why care responsibilities of personal networks have been taken for granted in these processes, and discuss whether personal networks should have a more prominent voice in the assignment of care responsibilities, and how this can be done. A theoretical framework of feminist care ethics inspired by scholars such as Margaret Urban Walker, Joan Tronto and Hilde Lindemann is used to reflect on the need for social inclusion.

Access source material through DOI

Sustaining care for a parent with dementia: an indefinite and intertwined process

Reproducing care demands and dependency, enacting and affirming values“flying blind” in how and how long to sustain caring This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values , and “flying blind” in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents’ needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.

Access source material through DOI

Informal care for people with chronic psychotic symptoms: four case studies in a San community in South Africa

Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.

Access source material through DOI

The influence of institutional discourses on the work of informal carers: an institutional ethnography from the perspective of informal carers

Background The growing numbers of seniors worldwide and the need for support and services that follow from a higher standard of living have led to an increased focus on scarce benefits and limited human resources. At the same time, many western countries have had to make welfare cuts to balance budgets. This has brought the contributions of informal carers to the fore. Thus far, the focus has generally been on the need for the informal carers to receive information and support to enable them to contribute. Methods The study is designed as an institutional ethnography. The article describes the social processes of informal caregiving and how it interacts with formal caregiving, from the perspective of informal carers. The research question for the study is How do institutional discourses on the work of informal carers influence informal carework? Data for the article comes from qualitative semi-structured interviews with 26 informal carers caring for persons with dementia in Norway, and with 7 administrators working in the allocation divisions of five different municipalities. Results The results demonstrate how three institutional discourses of informal carers’ work influence the allocation divisions’ practices and the work of informal carers in caring for their next of kin. The three discourses are categorised as moral and family obligation, shared care and task specificity. The informal carers want to contribute, as they feel a family and moral obligation to their next of kin. In the interaction with the allocation division, they find that the expectation that they will share in the carework and perform specific tasks forces them to perform care within a framework set by the public services. Conclusions The findings suggest that further research should challenge how services are distributed and allocated rather than focus on how to enable informal carers to fulfil their role better. Because of their moral and family obligation, the informal carers do not have to be forced to perform certain tasks or parts of the shared care. To maintain the informal carers’ carework and to fully utilise their contributions, public services would benefit from collaborating with the informal carers to fulfil the total care need of the person with dementia.

Access source material through DOI

Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden

Background and Objectives: Structural features of formal care systems influence the amount, difficulty, and complexity of what carers do as they interface with those systems. In this study, we explored how carers navigate health and social care systems, and their experiences of structural burden related to features such as complexity and fragmentation. Research Design and Methods: This qualitative descriptive inquiry drew on data from in-person interviews with 32 carers of older adults, which were analyzed first using inductive thematic analysis and then using structural burden as a conceptual lens. Results:  Participant accounts revealed how navigating formal systems on behalf of older adult family members can exact considerable demands on carers in terms of time investment and emotional energy. In this way, care systems exacerbate the stress and structural burden experienced by carers, even when formal services alleviate other forms of carer burden. Discussion and Implications: Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.

Access source material through DOI

Help-Seeking in Suicidal Situations: Paramount and yet Challenging. Interactions between Significant Others of Suicidal Persons and Health Care Providers

Significant others are often crucial for suicidal persons or suicide attempters’ access to care, yet little is known about their efforts to seek help. This article presents the findings of a qualitative pilot study carried out in Switzerland on the help-seeking process of 18 significant others, their perception of the care received by their loved one, and the interactions and collaboration they experienced with professionals. Most significant others repeatedly sought out support for their loved one and themselves. The help-seeking process seemed mostly difficult, was seldom successful on the first attempt, and was filled with multiple difficulties, such as availability and continuity of care and cooperation issues with professionals. Two-thirds of participants were not satisfied with the care provided to their loved ones and half of them faced challenges in their cooperation with professionals, i.e., poor sharing of information or not being acknowledged as partners or supported by professionals. Based on their experience, providing education about suicidal crises and care programs to significant others might lighten their burden and improve their cooperation with professionals, who in turn may benefit from training in communication issues and specific methods of cooperation with significant others in suicidal situations.

Access source material through DOI

Stakeholders' views and experiences of care and interventions for addressing frailty and pre-frailty: A meta-synthesis of qualitative evidence

Frailty is a common condition in older age and is a public health concern which requires integrated care and involves different stakeholders. This meta-synthesis focuses on experiences, understanding, and attitudes towards screening, care, intervention and prevention for frailty across frail and healthy older persons, caregivers, health and social care practitioners. Studies published since 2001 were identified through search of electronic databases; 81 eligible papers were identified and read in full, and 45 papers were finally included and synthesized. The synthesis was conducted with a meta-ethnographic approach. We identified four key themes: Uncertainty about malleability of frailty; Strategies to prevent or to respond to frailty; Capacity to care and person and family-centred service provision; Power and choice. A bottom-up approach which emphasises and works in synchrony with frail older people's and their families' values, goals, resources and optimisation strategies is necessary. A greater employment of psychological skills, enhancing communication abilities and tools to overcome disempowering attitudes should inform care organisation, resulting in more efficient and satisfactory use of services. Public health communication about prevention and management of frailty should be founded on a paradigm of resilience, balanced acceptance, and coping. Addressing stakeholders’ views about the preventability of frailty was seen as a salient need.

Access source material through DOI

Factors That Influence Self-Reported Health Changes With Caregiving

Objective: This study examined factors associated with the self-reported change in health status as a result of caregiving. Method: Multinomial logistic regression were performed to examine the sociodemographic characteristics, care recipients’ characteristics, and caregiving experiences that affect caregivers’ perceptions of health affected by caregiving using data from 1,087 caregiver respondents in the Caregiving in the U.S. 2015 data set. Data were collected through an online or telephone survey of randomly selected adults in 50 states. Results: Worsened self-reported health with caregiving occurred for caregivers aged 50 to 64, racial/ethnic minorities, those who lived within 20 min of the care recipient’s home, the presence of cognitive deficits, prolonged caregiving, and limited availability of accessible and affordable care services. Importantly, the feeling of choice in taking on care responsibilities was associated with an over fourfold increase in the odds ratio (OR) of better health in response to caregiving (OR = 4.21 confidence interval [CI] = [1.95, 9.08] p < .001). Discussion: Results suggest that improving accessibility of social service resources to assist caregivers in being better supported and having more choice in caregiving responsibilities may foster a positive change in health status with caregiving. 

Access source material through DOI

The role of informal caregivers at the end of life: providing support through Advance Care Planning

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue.

Access source material through DOI

“In our community, a friend is a psychologist”: An ethnographic study of informal care in two Bhutanese refugee communities

The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.

Access source material through DOI

Carers' Experiences of End-of-Life Care: A Scoping Review and Application of Personal Construct Psychology

Objective: Individuals who care for a family member or friend at end‐of‐life experience a range of practical and emotional challenges. This paper applies a theoretical framework of personal construct psychology (PCP) to explore carers’ experiences of end‐of‐life care, with a focus on implications for their sense of identity. 

Method: Literature searches were conducted through PsycINFO, Medline, PubMed, and Google Scholar for articles published since 2005 with a focus on carer experiences at end‐of‐life. Main themes identified through this literature review were considered in light of PCP theory, with particular attention on the notion of “threat” (i.e., an imminent and comprehensive change in a person's core identity structure). Implications were then drawn for providing practical carer support.

Results: The reviewed literature highlighted carers’ practical challenges at end‐of‐life (e.g., assisting with activities of daily living), emotional challenges (e.g., negotiating the imminent death of a family member or friend), and personal implications (e.g., sudden removal of caring responsibilities).

Conclusions: The constructivist notion of “threat” is a particularly salient concept for end‐of‐life carers as they negotiate the approaching death of a family member or friend. This can have significant ramifications for their sense of identity beyond bereavement. Clinical approaches based on PCP may effectively support end‐of‐life carers to develop identities beyond their caring role as they transition to a life without caring responsibilities.

Access source material through DOI

Informal caregivers experience of supplemental oxygen in pulmonary fibrosis

Background Patients prescribed supplemental oxygen (O2) therapy face challenges as they adjust to being constantly “tethered” to an oxygen delivery device. Informal caregivers (ICs) of patients with pulmonary fibrosis (PF) face their own, often overlooked hardships when O2 is brought into their home and added to their lives. Our aim was to understand the multiple effects of supplemental oxygen therapy on ICs of patients with PF. Methods We conducted single, semi-structured telephone interviews with twenty ICs of patients with PF who were using O2 for at least 8 months. We performed a qualitative, content analysis based in grounded theory to examine data across subjects. Results ICs initially reacted to O2 with trepidation and sadness as they came to recognize the changes it would cause in the lives of their patient-loved one (PLO). ICs recognized both beneficial and negative effects of O2 on their PLOs. ICs also realized that O2 created significant changes in their own lives, including introducing new roles and responsibilities for them, altering their home environments and significantly impacting their relationships with their PLOs. Although O2 was a tangible and constant reminder of disease progression, over time ICs were able to adapt and accept their new lives with O2. Conclusion ICs of patients with PF experience many life changes when their PLO is prescribed O2. Having O2 prescribers anticipate and recognize these challenges provides an opportunity to give support and guidance to ICs of PF patients who require O2 in the hopes of limiting the negative impact of O2 on their lives. Trial registration Clinicaltrials.gov , registration number NCT01961362 . Registered 9 October 2013.

Access source material through DOI

Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

Access source material through DOI

Diabetes literacy and informal social support: a qualitative study of patients at a diabetes centre

AIMS AND OBJECTIVES: To explore the resources that patients diagnosed with type 2 diabetes drew upon to manage the disease in their daily lives. BACKGROUND: Type 2 diabetes is a disease affecting Australian adults at a rate described as an 'epidemic'. Treatment usually focuses on patient self-management, which may require daily blood sugar monitoring, oral medications or injectable therapies, and regulating diet and exercise. Health research studies of patient self-management, including those involving type 2 diabetes, have focused largely on individual-centred definitions, though a number of studies, in particular qualitative studies, have indicated the positive role of social relationships and informal social networks. DESIGN: Exploratory, qualitative.  METHODS: The project focused on 26 patients attending a diabetes centre for clinical consultations with centre staff including doctors, diabetes educators, podiatrists and dietitians. The consultations were observed and audio recorded, followed by semi-structured, audio-recorded interviews with the patients and separate interviews with the consulting professional staff.  RESULTS: Overwhelmingly the patients drew on informal social networks of support to manage the disease. Spouses were significant, sometimes presenting with the patient as a 'team' approach to managing the disease. Sons and daughters also played a significant support role, especially interpreting during consultations and explaining health information. In some cases neighbours and also local community organisations provided informal support. Only two patients claimed not to use informal social support.  CONCLUSIONS: Informal social support in patients' self-management of type 2 diabetes was found to be an important factor to be considered by clinicians. The study suggested the need for a more deliberate or pro-active policy to involve patients' family and other informal social networks in treatment programs. RELEVANCE TO CLINICAL PRACTICE: Clinicians may need document and incorporate informal social support in the development and implementation of patient management plans.

Access source material through DOI

The construction of help during radiotherapy: Redefining informal care

Objectives: This study will explore how help is constructed during and following radiotherapy for patients with cancer.

Methods: Grounded theory methods were used in the study to explore the way in which family members and friends constructed a role for themselves in relation to patients receiving radiotherapy. A total of 22 helpers were interviewed. Patients were being treated for a range of cancers including breast, prostate, colorectal, and head and neck.

Results: Respondents in this study consistently defined themselves as “helpers” rather than “carers.” While radiotherapy as a treatment modality was mostly seen as noninvasive, the cancer diagnosis cast a long shadow over the lives of helpers and patients creating a separation in longstanding relationships. Helpers experienced this separation as “otherness.” Help became an important vehicle for bridging this separation. Individuals developed different ways of knowing about the patient as the basis for providing help. Two different types of help were identified in this study: the behind the scenes, largely invisible work that helpers undertook to help the patient without their knowledge and the explicit visible help that was much more commonly negotiated and discussed between helpers and patients.

Conclusions: The study provides the basis for a greater understanding on the part of professionals into the impact of diagnosis and radiotherapy treatment on family and friends. In doing so, the study identifies opportunities for the experience of helpers to be recognised and supported by professionals.

Access source material through DOI

An isolated involvement in mental health care – experiences of parents of young adults

Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.

Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.

Design: A secondary descriptive design with a deductive content analysis was used.

Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.

Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.

Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.

Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.

Access source material through DOI

Carer Experience Supporting Someone With Dementia and Cancer: A Narrative Approach

In this article, we examine the challenges of informal carers supporting someone with dementia and cancer within the United Kingdom. Interviews were conducted with seven informal carers using a narrative approach to examine the construction of their experiences. Our findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology center, and this can be challenging for carers. They find that they need to coordinate and manage both health professionals and their relative in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges including dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context.

Access source material through DOI

Association between Falls and Caregiving Tasks among Informal Caregivers: Canadian Community Health Survey Data

Falls are a common cause of morbidity and mortality in older adults. While research has explored the relationship between older care recipient falls and caregiver health, there has been little investigation of the relationship between caregiving tasks and falls in older caregivers. This study assessed associations between falls and caregiving frequency and type of caregiving tasks among informal older caregivers. Data from the Canadian Community Health Survey on Healthy Aging (Public Use Microdata File 2008-2009) (n = 2,934) were examined, using descriptive and logistic regression analyses. Higher frequency of caregiving was positively associated with falls, although those who performed household chores were less likely to report falling in the past year. Results suggest there may be an association between factors related to caregiving and falls in older caregivers. More research using longitudinal and experimental data is needed to better understand the relationship between caregiving tasks and falls in older caregivers.

Access source material through DOI

Informal caregivers' perspectives on health of and (potentially inappropriate) medication for (relatively) independent oldest-old people - a qualitative interview study

Background: Oldest-old persons frequently receive potentially inappropriate medication. Medication use takes place under the patients' informal caregivers' influence. We explored informal caregivers' perspectives on medication of (relatively) independent oldest-old persons to identify starting points for safer medication prescription/handling.; Methods: In this exploratory qualitative interview study we interviewed 45 informal caregivers of 45 oldest-old persons (23 with potentially inappropriate medication/22 without potentially inappropriate medication). Interviews were recorded, transcribed and content analyzed (deductive/inductive coding).; Results: Interviewees had little knowledge about/influence on oldest-old persons' medication, but declared to monitor oldest-old persons' needs for assistance. They were unaware of the concept of potentially inappropriate medication but sometimes sensitive to substance dependency. Most informal caregivers were satisfied with the oldest-old persons' medication and viewed medication as increasing the patients' quality of life. Inadequate communication was found between informal caregivers and general practitioners.; Conclusions: Influence of informal caregivers on (relatively) independent oldest-old persons' medication seems low. Stakeholders need to be aware that there is a transitional period where independency of oldest-old persons decreases and support needs increase which may be missed by (in-)formal caregivers or concealed by oldest-old persons. Monitoring patients' medication competencies; measures supporting communication between informal caregivers and health care professionals; provision of educational and support resources for informal caregivers and the acceptance of oldest-old persons' increasing assistance needs may increase medication safety.

Access source material through DOI

Physical health problems in people with psychosis: The issue for informal carers

Background: Reduced life expectancies are recorded in adults with psychotic disorders. Informal carers play key roles in improving illness outcomes for patients, including significantly reducing rates of relapse and hospitalisation. There is, however, a dearth of literature detailing carers' perspectives on physical health problems in the relatives they care for and implications for those in the caregiving role. The study sought to explore carers' subjective experiences of supporting a relative with psychosis and physical health problems.; Methods: Carers of adults with psychosis were interviewed individually, or as part of a group, about physical health problems in the relatives they care for.; Results: Five key themes were identified from the interviews that reflected (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers' role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.; Conclusion: Service initiatives that are designed to improve patient physical health in psychosis should not overlook the role that informal carers might have in supporting this process. The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.

Access source material through DOI

Determinants of Informal Care, Burden, and Risk of Burnout in Caregivers of Stroke Survivors: The CONOCES Study

Background and Purpose: The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain.; Methods: The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers. Several multivariate models were applied to estimate the likelihood of receiving informal caregiving, the burden, and the likelihood of caregivers being at a high risk of burnout.; Results: Eighty percent of those still alive at 3 and 12 months poststroke were receiving informal care. More than 40% of those receiving care needed a secondary caregiver at 3 months poststroke. The likelihood of receiving informal care was associated with stroke severity and the individual's health-related quality of life. When informal care was provided, both the burden borne by caregivers and the likelihood of caregivers being at a high risk of burnout was associated with (1) caregiving hours; (2) the patient's health-related quality of life; (3) the severity of the stroke measured at discharge; (4) the patient having atrial fibrillation; and (5) the degree of dependence.; Conclusions: This study reveals the heavy burden borne by the caregivers of stroke survivors. Our analysis also identifies explanatory and predictive variables for the likelihood of receiving informal care, caregiver burden, and high risk of burnout.

Access source material through DOI

Weekly hours of informal caregiving and paid work, and the risk of cardiovascular disease

Background: Little is known on the association between weekly hours of informal caregiving and risk of cardiovascular disease (CVD). The objective was to investigate the individual and joint effects of weekly hours of informal caregiving and paid work on the risk of CVD.; Methods: Pooled analysis with 1396 informal caregivers in gainful employment, from the Swedish Longitudinal Occupational Survey of Health and the Whitehall II study. Informal caregiving was defined as care for an aged or disabled relative. The outcome was CVD during 10 years follow-up. Analyzes were adjusted for age, sex, children, marital status and occupational grade.; Results: There were 59 cases of CVD. Providing care >20 h weekly were associated with a higher risk of CVD compared to those providing care 1-8 h weekly (hazard ratio = 2.63, 95%CI: 1.20; 5.76), irrespectively of weekly work hours. In sensitivity analyzes, we found this risk to be markedly higher among long-term caregivers (6.17, 95%CI: 1.73; 22.1) compared to short-term caregivers (0.89, 95%CI: 0.10; 8.08). Caregivers working ≥55 h weekly were at higher risk of CVD (2.23, 95%CI: 1.14; 4.35) compared to those working 35-40 h weekly. Those providing care >8 h and working ≤40 h weekly had a higher risk of CVD compared to those providing care 1-8 h and working ≤40 h (3.23, 95%CI: 1.25; 8.37).; Conclusion: A high number of weekly hours of informal caregiving as opposed to few weekly hours is associated with a higher risk of CVD, irrespectively of weekly work hours. The excess risk seemed to be driven by those providing care over long periods of time.

Access source material through DOI

Living with an indwelling urethral catheter in a community setting: Exploring triggers for unscheduled community nurse "out-of-hours" visits

Aims and Objective: To explore the experiences of community patients living with a urethral catheter and those caring for them.; Background: Living at home with an indwelling urethral catheter often results in consequences that create a double-edged burden: first, on patients and their relative carers and second, in terms of unscheduled community nurse service "out-of-hours" provision.; Design: One-to-one interviews were conducted with patients living at home, their relative carers, qualified community nurses, augmented home carers and healthcare assistant. Quantitative data in relation to frequency, duration and reason for visits were extracted from the community nurse "out-of-hours" service database.; Results: Quantitative data showed that 20% of all community nurses unscheduled "out-of-hours" visits were triggered by an indwelling urethral catheter consequence. Qualitative data revealed that health and social care staff felt knowledgeable and skilled in urethral catheter management. Conversely, patients and relative carers felt poorly equipped to manage the situation when something went wrong. The majority of patients described the catheter as being a debilitating source of anxiety and pain that reduced their quality of life.; Conclusion: Urethral catheter complications are frequent and impact seriously on quality of life with informal carers also affected. Community nurses experienced frequent unscheduled visits. Patients often feel isolated as well as lacking in knowledge, skills and information on catheter management. Having better urethral catheter information resources could increase patient and relative carer confidence, encourage self-care and problem solving, as well as facilitate meaningful consistent dialogue between patients and those who provide them with help and support.; Relevance To Clinical Practice: Better patient information resources regarding urethral catheter management have potential to improve patient and relative carer quality of life and reduce service provision burden.

Access source material through DOI

Medication management activities performed by informal caregivers of older adults

Background: Medication management is commonly performed by informal caregivers, yet they are often unprepared and ill-equipped to manage complex medication regimens for their older adult care recipients. In order to develop interventions that will enhance the caregiver's ability to safely and confidently manage medications, it is critical to first understand caregiver challenges and unmet needs related to medication management.; Objectives: To explore how informal caregivers manage medications for their older adult care recipients by identifying the activities involved in medication management and the tools or strategies used to facilitate these activities.; Methods: Four focus groups with caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and the tools or strategies used to facilitate these activities. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach.; Results: Caregivers were commonly involved in 2 types of activities: direct activities requiring physical handling of medications such as obtaining medications, preparing pill boxes, and assisting with medication administration; and indirect activities that were more complex and required more of a cognitive effort by the caregiver, such as organizing and tracking medications, gathering information, and making treatment decisions. They utilized a variety of tools and strategies to support these medication management activities; however, these approaches often needed to be modified or personalized to meet the specific needs of their caregiving situation.; Conclusions: Informal caregivers play a vital role in ensuring safe and appropriate medication use by older adults. Medication management is complex and involves many activities that are supported through the use of a variety of tools and strategies that have been adapted and individualized to each specific caregiving scenario. Caregivers should be an important component of interventions that aim to improve medication use among older adults.

Access source material through DOI

Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder

Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

Access source material through DOI

Individualization and the Health Care Mosaic in Assisted Living

Background and Objectives: Assisted living (AL) is a popular residential long-term care option for frail older adults in the United States. Most residents have multiple comorbidities and considerable health care needs, but little is known about their health care arrangements, particularly over time. Our goal is to understand how health care is managed and experienced in AL by residents and their care network members.; Research Design and Methods: This grounded theory analysis focuses on the delivery of health care in AL. Qualitative data were gathered from 28 residents and 114 of their care network members followed over a 2-year period in 4 diverse settings as part of the larger study, "Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living."; Results: Findings show that health care in AL involves routine, acute, rehabilitative, and end-of-life care, is provided by residents, formal and informal caregivers, and occurs on- and off-site. Our conceptual model derived from grounded theory analysis, "individualizing health care," reflects the variability found in care arrangements over time and the multiple, multilevel factors we identified related to residents and caregivers (e.g., age, health), care networks (e.g., size, composition), residences (e.g., ownership), and community and regulatory contexts. This variability leads to individualization and a mosaic of health care among AL residents and communities.; Discussion and Implications: Our consideration of health care and emphasis on care networks draw attention to the importance of communication and need for collaboration within care networks as key avenues for improving care for this and other frail populations.

Access source material through DOI

Formal and informal care for community-dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community-based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community-dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi-experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post-questionnaires. Within- and between-group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed.; Trial Registration: Current Controlled Trials ISRNT05748494.

Access source material through DOI

Putting responsive behaviours in place: Examining how formal and informal carers understand the actions of people with dementia

Living alongside and working with people with dementia who yell or strike out can be very demanding and sometimes harmful. It is generally understood that such actions may be a response to the social and physical environment, yet very little attention has been paid to understanding what role the environment plays in eliciting and responding to these actions across different settings. Drawing on 27 semi-structured interviews with formal and informal carers, this article examines how carers understand the actions of people with dementia in relation to their environment. We identify individual, interpersonal, local environmental, macro-scale and temporal dynamics that influence the actions of people with dementia and carers' capacities to work with them. Drawing on relational thinking and the concept of structural violence, we argue that many of the problems and solutions associated with aggressive actions are located outside the person with dementia in broader relations and systems of care. We conclude with a discussion of how these understandings can inform developments in the systems of home and community care.

Access source material through DOI

Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.

Access source material through DOI

Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journalin