Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.
Purpose: To assess the burden among caregivers of patients with heart failure (HF) with left ventricular ejection fraction (LVEF) ≤ 60%. The burden by New York Heart Association (NYHA) functional class was also characterized. Patients and Methods: A cross-sectional study was conducted in France, Germany, Italy, Spain, and UK from June to November 2019. Patient record forms were completed by 257 cardiologists and 158 general practitioners for consecutive HF patients. Caregivers who accompanied the patient to their consultation completed a caregiver self-completion survey voluntarily, which included the Family Caregiver Quality of Life Questionnaire (FAMQOL) and 5-level 5-dimension EuroQol questionnaire (EQ-5D-5L). Results: We analyzed 361 caregivers of patients with HF (NYHA class I, n=41; II, n=212; III IV, n=108). Mean age of caregivers was 58.8 years (NYHA I/II/III–IV: 59.1/60.8/54.6 years; p=0.0029), with majority being females (73.1%). Caregivers spent on average 19.8 hours/week caring for a HF patient, which increased with increase in NYHA class (I/II/III–IV: 11.8/18.1/25.9 hours/week; p=0.0094). Caregivers (24.1%) reported providing emotional support/encouragement to patients as the most troublesome/inconvenient caregiving activity (no significant difference across NYHA class). Nearly one-third of caregivers experienced stress (NYHA I/II/III–IV: 17.1%/28.8%/40.7%; p=0.0111) and anxiety (26.8%/24.1%/39.8%; p=0.0127) due to caregiving burden. The overall FAMQOL mean score decreased significantly (poorer QoL) with increase in NYHA class (I/II/III–IV: 58.1/56.3/52.2; p=0.0069). A trend of decreasing scores with increasing NYHA class was observed across physical, emotional, and social domains (each p≤ 0.012). Conclusion: Caregivers of HF patients with LVEF ≤ 60% experienced a significant burden, which was higher among caregivers of patients with more severe and symptomatic disease.
Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.
The authors present a method for estimating the value and cost effectiveness of the U.S. government initiative known as the American Jobs Plan, particularly regarding the program's allocation of funds targeted toward the expansion of access to home and community-based services (HCBS) for older citizens with disabilities.
Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.
Introduction: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. Methods: A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies’ eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. Results: Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients’ dysphagia (8 studies, 53.3%); caregivers’ perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. Conclusions: The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients’ and caregivers’ lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients’ and caregivers’ needs.
Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future.
Background: Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods: A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results: The majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. The mean burden scores significantly differed by caregivers’ age (P=0.017), marital status (P=0.017), average monthly income (P=0.035), and child’s school attendance (P=0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, respectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions: Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.
Background: Sickle cell disease (SCD) requires continuous familycentred management due to its chronicity and severity. Affected children depend greatly on their caregivers for assistance. SCD is the fourth leading cause of hospitalisation in children in Jamaica, with an incidence rate of 1:150 births. This strong dependence, frequent hospitalisation, medical visits and along with the unpredictable nature of the disease may cause financial strain and caregiver burden. This study seeks to determine the level of caregiver burden experienced by caregivers of children living with sickle cell disease attending a clinic in urban Jamaica. Design: A cross-sectional study was conducted among 180 caregivers of children ages 1 to 16 years living with SCD, attending a specialised sickle cell clinic. Data were collected using the Zarit Burden Interview (ZBI) Version 1.0. Descriptive statistics were utilised to summarise data. Results: The majority (79%) of respondents were females between the ages of 20 and 49 years old. Majority (76%) were employed, with 13% earning less than $10,000 which is below minimum wage. 48% of caregivers reported that they rarely or never experienced burden of care with their children. The ZBI overall burden score was M = 27.2, which indicate mild -- moderate burden. The highest burden was future expectations for child (41%). Majority (73%) indicated they often did not have enough money to care for the child. Conclusion: In this study, caregivers are younger and experienced burden mild to moderate; factors such as stable income and family support helped to reduce burden.
Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. Results: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/ moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. Conclusions: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers' burden is not directly related to the income level or the functional level of the child. Families' need for information should also be prioritized within the rehabilitation program.
Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.
Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units.
Purpose: Family members of people with Parkinson’s disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method: A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results: Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members’ availability. Conclusions: While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families’ perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.
Background: The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. Design: The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. Results: A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. Conclusion: It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a 'truly' therapeutic relationship, which can help promote parental empowerment.
Background: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. Methods: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. Results: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient’s capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. Conclusions: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.
Purpose: The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. Materials and methods: Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. Results: Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children’s skills in using assistive technology, (iii) caregivers’ digital literacy and (iv) their training needs. Conclusions: The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers’ skills in the search for and access to practical information.Implication for Rehabilitation Cognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home. Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development. Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home.
Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.
Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
Background: Latinas are at an increased risk for diabetes and reproductive health (RH) complications with sexuality and pregnancy. This study explored the understanding of diabetes related to RH, pregnancy, unplanned pregnancies, preconceptioncounseling, tight-control, and family planning among Latina adolescents with diabetes and their mothers and explored converging themes. Method: The qualitative descriptive study used written open-ended questions (English or Spanish) with Latina mothers (n = 13) and daughters (n = 21). Responses were transcribed. Content analysis was used by four researchers who coded and discussed themes and reached consensus. Converging themes were confirmed using Atlas.ti software. Findings: Seven themes emerged from the mother–daughter dyad: communication (awkwardness, ambivalence, styles); control (being controlled vs. controlling); consequences (fertility, complications); planning (pregnancy, being healthy, life plan, RH); support; danger, risk, and safety; and stigma. Conclusion: Many mother–daughter dyads were not ready to discuss RH among themselves. Cultural and familial perspectives should be considered when providing care and preconception counseling to this population.
Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis.; Results: Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL.; Conclusions: Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers.
Background: Parkinson’s disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. Methods: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson’s Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer’s Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson’s Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. Results: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r 2 =0.024, P=0.0380), patient health-related quality of life (PDQ-39, r 2 =0.161, P 2 =0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r 2 =0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r 2 =0.088, P Conclusions: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.
Background: Heart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.; Objective: The aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.; Methods: We recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.; Results: Six themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.; Conclusions: Patients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF.
Objectives: High tension is the leading cause of the increased risk of mortality among family caregivers (FCGs), resulting in inadequate care and abandonment of the patient. Spirituality promotion is a sense of mastery and control and strength to endure the stressors of illness. To the best of our knowledge, no tool is available for investigating the current spiritual state of the FCG and identifying the need for spiritual intervention in Iran. Therefore, the present study aimed to identify the level of independence of patients with chronic disease and to explore the concept of spirituality and psychometric of related scale, namely, caregiver's spiritual empowering scale (CSES). Materials and Methods: This study used a multiphase mixed-method approach and was conducted from June 2016 to August 2018 in the southwestern region of Iran. The cross-sectional surveys of activities of daily living (ADL) and instrumental activities of daily living (IADL) were conducted on people with chronic diseases (n = 389) in the first phase. In the second phase, the exploratory sequential mixed method was applied for content analysis study (n = 26) and psychometric of CSES in FCG (n = 395). Results: The caregivers' age was within the range of 17-74 years (42 Mean +/- 12SD). Based on the results of ADL IADL, 87% and 99.5% of patients were dependent or in need of help. In the qualitative study phase, four main categories emerged in the context of "Empowering spirituality". The reliability and validity of CSES including 12 items loaded one a single factor were confirmed based on the content validity ratio >0.45, content validity index >0.78, kappa coefficient >0.75, impact score >1.5, alpha = 0.92, interclass correlation coefficient = 0.91, 95% CI = 0.90-0.92, r = 0.57, P = 0.000, standard error of the mean = 1.64, and Kaiser-Meyer-Olkin index = 94, P < 0.001. Conclusions: In general, spiritual empowerment is essential as a low-cost and effective method in increasing the dependence of people with chronic diseases and the risk of burnout in FCG. Accordingly, the CSES is considered a valid and reliable instrument for measuring the status of empowerment spirituality in informal caregivers and the effectiveness of interventions.
Objectives: To investigate the effects of a national support program on family caregivers for long-term care (LTC) recipients. Design: A single-blinded randomized controlled trial compared the 8-week Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) program consisting of 6 individual inhome, 3 group support, and 2 telephone sessions with a multicomponent intervention, and a control group. Setting and Participants: In total, 969 caregivers who were living with LTC recipients assessed as having a high caregiving burden in 12 Korean cities. Measures: The primary outcomes were depression, burden, and stress levels of caregivers, the secondary outcomes were caregiver self-efficacy, positive aspects of caregiving, social support, social activities, and health risk behaviors. These outcomes were measured at baseline and after the 8-week program, analyzed using modified intention-to-treat, per-protocol (PP), and non-PP analyses. Results: The modified intention-to-treat analysis revealed significant improvements in burden (effect size, = 0.010, P =.008), depression (h2p = 0.012, P = .003), and health risk behaviors (h2p = 0.010, P =.012) for the experimental group compared with the control group. However, there were no significant differences between the 2 groups in improving stress (P =.997), social support (P =.234), or social activities (P =.816). The PP analysis indicated that the COMPASS program was successful in increasing positive aspects of caregiving (h2p = 0.013, P =.004) and self-efficacy (h2p = 0.010, P =.032) compared with the control group. Conclusions and Implications: The COMPASS program was effective in family caregivers of LTC recipients in critical aspects of physical and psychological outcomes, especially in demonstrating the important role of participating in group support sessions. It is feasible for the program to become a formal national support program as part of the national insurance system in Republic of Korea. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
Aim: The family plays a key role in supporting and caring for patients who have a gastrointestinal stoma because of cancer. This study investigated the quality of life of family members caring for such patients. Methods: A descriptive study was conducted in 2020 in Iran. The study sample consisted of 250 family members caring for cancer patients with an intestinal stoma. The Caregiver Quality of Life Index–Cancer scale was used to measure quality of life. This scale has 35 questions, which are categorised into four subscales: mental/ emotional burden; lifestyle disruption; positive adaptation; and financial concerns. The highest possible total score is 140 (35 in each subscale), and a high score indicates a poor quality of life. Results: A total of 250 carers took part in the study. Of these, 143 (57.2%) were men and the average age was 35.1 years. Mean scores of mental/emotional burden, lifestyle disruption, positive adaptation, and financial concerns were 28.4±41, 17.3±3.2, 19.8±28, and 8.6±1.2 respectively. No significant relationship was found between participants’ quality of life and demographic variables. Conclusion: Carers’ quality of life is relatively poor. Carers’ quality of life need to be improved and support programmes, devised and delivered by nurses, could have a role in this.
Objective: Many caregivers report finding positive meanings in their caregiving roles and activities. The positive aspects of caregiving (PAC) scale was designed to measure positive appraisals of caregiving. This study assessed the reliability and validity of the Korean version of the PAC for family caregivers of people with amyotrophic lateral sclerosis (ALS).; Method: The instrument's content and semantic equivalence were established using translation and back translation of the PAC. A convenience sample of 127 family caregivers of patients with ALS in Korea was recruited. Content, construct, and convergent validity of the Korean PAC were evaluated. Cronbach's α was used to assess reliability. This study used secondary data; the primary study received approval from the Institutional Review Board of H Hospital, from where data were collected. The consent forms did not mention the future use of data. Therefore, we have applied for approval regarding this study's protocol and exemption from informed consent.; Results: The Cronbach's α was 0.92, and internal consistency was acceptable. Exploratory factor analysis supported the construct validity with a two-factor solution explaining 74.73% of the total variance. Regarding convergent validity, the Korean PAC score negatively correlated with caregiver burden and depression and positively with self-rated health status. We were unable to evaluate the suitability of the suggested structural dimensionality through confirmatory factor analysis. Furthermore, as we used secondary data, we could not assess retest reliability for the evaluation of the scale's stability.; Significance of Results: The Korean PAC was found to be an applicable instrument with satisfactory reliability and validity and suitable for further use as a measure for positive appraisals of caregiving for family caregivers of people with ALS. It may be effective for measuring caregivers' psychological resources.
Introduction: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. Methods: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. Results: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. Conclusion: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.
• Heart failure caregiver depressive symptoms predict caregiver quality of life. • Family functioning predict heart failure caregiver quality of life. • Depressive symptoms are a mediator between family functioning and quality of life. Caregivers of patients with heart failure (HF) report depressive symptoms and poor quality of life (QOL) related to caregiving and poor family functioning, placing them at risk for poor health.
The purpose of this study was to examine the effect of depressive symptoms on the relationship between family functioning and quality of life in the HF caregiver. A sample of 92 HF caregivers were enrolled from an ambulatory clinic at a large academic medical center. A mediation analysis was used to analyze data obtained from the Family Assessment Device (FAD), the Patient Health Questionaire-9 (PHQ-9), and the Short Form-12 Health Survey Version 2 (SF-12v2). Depressive symptoms were found to be a significant mediator in the relationship between family functioning and caregiver quality of life. The results of this study suggest that interventions targeting caregiver depression and family functioning could be effective in enhancing HF caregivers' physical and mental QOL.
Background: Improving individuals' experience of care is now a critical goal of health care systems. Although a number of instruments have been developed to measure experience of care, few instruments measure family caregivers' experience of interprofessional care for patients and families.Objective: To develop the Japanese version of the Caregivers' Experience Instrument (J-IEXPAC CAREGIVERS) and to investigate its validity in assessing quality of integrated care for both patients with chronic conditions and their family caregivers, from the caregivers' perspective, in Japan. Methods: We used a cross-sectional questionnaire survey to test the validity and internal consistency of J-IEXPAC CAREGIVERS. Four hundred family caregivers were recruited in three municipalities. We evaluated the feasibility, structural validity, internal consistency and hypothesis testing for construct validity of the scale. Results: A total of 274 (68.5%) questionnaires were analysed. Confirmatory factor analysis showed acceptable model fit for the hypothesized two-factor model according to fit indices, as identified for the original version: attention for the patient and attention for the caregiver. Cronbach's alpha for score in J-IEXPAC CAREGIVERS with 12 items was high (0.92). Spearman's rank correlation coefficient between overall caregiver satisfaction and J-IEXPAC CAREGIVERS score was 0.71. Family caregivers who experienced home-visit services had significantly (P = 0.001) higher total scores than those who did not. Conclusions: This pilot study showed that the J-IEXPAC CAREGIVERS is valid and reliable. This scale can be useful for evaluating quality of integrated care, with focus on family caregivers and patients with chronic conditions in Japan.
Background. While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients' and caregivers' perspectives on the meaning and role of patient empowerment in PD. Methods. Adult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed. Results. We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen). Conclusions. Understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.
Objective: To describe the living situation of family caregivers of persons with spinal cord injury. Design: Cross-sectional questionnaire. Subjects: Primary family caregivers of persons with chronic spinal cord injury in Switzerland. Methods: Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care givers of persons dealing with long-term health condi tions in the general population, using a propensity score based algorithm. Results: A total of 717 family caregivers participated in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life. Conclusion: Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support services. The healthcare system could provide alternative support measures, such as direct financial compensation.
Background: Informal caregivers play an important role in caring for patients with chronic conditions. Little is known about the quality of life among caregivers of patients with chronic illnesses in Thailand. The purpose of this study was to investigate the relationships among knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life among informal caregivers. Methods: A total of 402 informal caregivers for their elderly co-habitants suffering from hypertension were randomly selected to participate in this cross-sectional study. Data collection was performed in rural areas of Phayao province, located in the northern part of Thailand. Self-administered questionnaires were employed, which covered knowledge and behaviors toward health care for elderly patients with hypertension, and the Thai version of the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) questionnaire. Results: The scores of knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life were at low and fair levels. In the multivariable linear regression model, the results showed that four variables - age, caregiver's relationship to the patient, knowledge, and behaviors toward health care for elderly patients with hypertension - were significantly related to quality of life among caregivers (p < 0.05). Conclusion: Knowledge and behaviors toward health care for hypertensive patients influence the quality of life among informal caregivers. The caregivers in rural communities should be encouraged to become educated on the stages of hypertension, preparation for taking care of the elderly with high blood pressure, and effective behavioral care for patients, in order to improve the quality of life of both caregiver and patient. In addition, health care providers should have clear guidelines for development of the health care system to enhance the potential care and quality of life among informal caregivers.
BACKGROUND: Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. METHODS: This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD. RESULTS: Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework. CONCLUSION: This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.
Background: The intricate relationship between caregiving and health may to some extent be determined by the burden and restrictions imposed on informal caregivers, and the impact these experiences have on health behaviours. It is assumed that a positive caregiver experience leads to health promoting behaviours in caregivers, whereas a negative experience induces the opposite. The objective of this study is to test these assumptions and to investigate the association between the caregiver experience and health behaviours in the caregiving partners of persons with severe physical impairment, due to spinal cord injury. Methods: Cross-sectional survey data from 133 couples of caregiving partners and persons with spinal cord injury living in Switzerland was used. We employed multivariable regression to evaluate the associations of the caregiver experience (objective and subjective caregiver burden, and satisfaction with caregiving) with health behaviours (physical activity, fruit and vegetable consumption, alcohol consumption, smoking, and sleep duration). Results: The most robust associations were found between subjective caregiver burden and health behaviours, whereby caregivers reporting a higher burden reported less physical activity (Incidence Rate Ratio [IRR]:0.41; 95% CI 0.35-0.49), more alcohol consumption (IRR: 1.46; 1.20-1.77), greater smoking intensity (IRR: 1.29; 0.95-1.73), and a higher likelihood of insufficient sleep duration (Odds Ratio [OR]: 4.98; 1.58-15.74). Caregivers, who reported high objective burden, i.e. invested long hours in caregiving, were more prone to partake in health adverse behaviours, in particular greater alcohol consumption. Results also suggested that caregivers who were satisfied in their role and who received social support in caregiving were more likely to be physically active. Conclusion: Caregivers suffering from high emotional and time burden may benefit from both practical and psychological support. This support may release resources enabling individuals to partake in health promoting behaviours, or to develop coping strategies to better deal with the burden of caregiving.
Objective We aimed to assess and synthesise the current state of quantitative and qualitative research concerning creative arts interventions for older informal caregivers of people with neurological conditions. Methods A systematic search was employed to identify studies that examined creative arts interventions for older informal caregivers, which were synthesised in this integrative review. We searched the following databases: MEDLINE, PubMed, EBSCO, CINAHL, EMBASE, PsycINFO, Cochrane Library, Scopus, Web of Science, and Google Scholar. We also backwards searched references of all relevant studies and inspected trials registers. Results Of the 516 studies identified, 17 were included: one was quantitative, nine were qualitative and seven used mixed methods. All included quantitative studies were pilot or feasibility studies employing pre- and post-test design with small sample sizes. Studies varied in relation to the type of creative intervention and evaluation methods, which precluded meta-analysis. Large effect sizes were detected in wellbeing measures following singing and art interventions. The qualitative synthesis highlighted that interventions created space for caregivers to make sense of, accept and adapt to their identity as a caregiver. Personal developments, such as learning new skills, were viewed positively by caregivers as well as welcoming the opportunity to gain cognitive and behavioural skills, and having opportunities to unload emotions in a safe space were important to caregivers. Group creative interventions were particularly helpful in creating social connections with their care-recipients and other caregivers. Conclusions The current review revealed all creative interventions focused on caregivers of people living with dementia; subsequently, this identified gaps in the evidence of creative interventions for informal caregivers of other neurological conditions. There are encouraging preliminary data on music and art interventions, however, little data exists on other art forms, e.g., drama, dance. Creative interventions may appeal to many caregivers, offering a range of psycho-social benefits. The findings of the current review open the way for future research to develop appropriate and creative arts programmes and to test their efficacy with robust tools.
Background: Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment. Aim: To explore individual quality of life of people with ALS and their informal caregivers over time. Methods: Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results: Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased. Conclusion: The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.
Purpose: The aim of this study was to assess the burden and the quality of life (QoL) perceived by caregivers assisting advanced Parkinson's disease (PD) patients.; Patients and Methods: Consecutive advanced PD patients treated with levodopa/carbidopa intestinal gel (LCIG) or continuous subcutaneous apomorphine infusion (CSAI) or care as usual (CU) and their care partners were recruited during routine visits according to a cross-sectional design. Caregiver's distress was assessed by Zarit Burden Interview (ZBI) and a QoL survey to evaluate and understand the burden experienced by care partners during family and working activities.; Results: A total of 126 patients (53 LCIG, 19 CSAI and 54 CU) and their care partners were enrolled. The ZBI score boxplot showed that LCIG and CU populations have a similar distribution (ZBI inter-quartile range [IQR] values respectively 18-42 for LCIG and 19-43 for CU group), while the CSAI group has a wider score range (IQR 16-52). Caregivers assisting patients in treatment with LCIG have more time to perform family or household duties (p=0.0022), or to engage in leisure activities (p=0.0073) compared to CU, while no difference was found when compared to CSAI group. Approximately 50% of the care partners showed mood changes in the last 6 months and LCIG and CSAI had less impact on caregiver's mood compared to CU. Patients treated with LCIG were more independent in taking a bath or shower without assistance and were more able to move and walk without assistance.; Conclusion: Care partners of advanced PD patients treated with device-aided therapies have more time for their own life and a better perception of their QoL with a tendency to an improvement of mood compared with those of patients treated with CU.
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. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.
Purpose: There have been little researches examining the role of family functioning on psychological outcomes in the field of adult epilepsy. We determined whether family functioning is correlated with felt stigma in adults with epilepsy. Methods: In this cross-sectional study, adults with epilepsy and their caregivers were recruited. Data were collected using the Family Adaptability and Cohesion Evaluation Scale (FACES) Ill, the Family adaptation, partnership, growth, affection, and resolve (APGAR) questionnaire, the Stigma Scale for Epilepsy (SS-E), the modified questionnaire for episodes of discrimination, and the Beck Depression Inventory. Family functioning was measured by the caregivers. Results: A total of 273 adult patients and their primary caregivers were included. Multivariate logistic analyses showed that family cohesion and excellent family functioning were negatively correlated with felt stigma after controlling for confounding variables. Enacted stigma, depressive symptoms, and university education were also significant. Interaction between enacted stigma and family cohesion on felt stigma was significant (p = 0.049). Family cohesion was negatively correlated with felt stigma only in the patients with enacted stigma (p = 0.011). Conclusions: Family functioning especially family cohesion may have protective effects against development of felt stigma in adults with epilepsy. Such protecting effects against felt stigma may be different according to enacted stigma. This understanding is helpful for developing effective psychosocial interventions to reduce felt stigma in patients with epilepsy.
Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone.; Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire.; Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions.; Significance of Results: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.
BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross‐sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0–47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10‐item Scale score was 11.5 (SD = 7.1; range = 0–30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma‐based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.
Inflammatory bowel disease (IBD), including Crohn's and ulcerative colitis diseases, is characterized by clinical periods of remission and relapse. Excessive care stress can have long-term negative physical and psychological consequences not only for caregivers but also for the recipients of care. This integrative review aims to identify, describe, and synthesize the results of current available research focused on the burdens of IBDs on family caregiver. An integrative review was performed using Whittemore and Knafl methodology. A systematic search of electronic databases including Web of Science, PubMed, Embase, and Scopus from January 2000 to October 2019 was conducted. Articles were included if published in English and focus on IBD burden on family caregivers. Of 730 records, 16 articles with quantitative, qualitative, and Q methodology study designs were eventually included in the review. The synthesis of these articles led to the identification of four key types of effects: biopsychosocial, daily life activities, physical health, and financial. The chronic and relapsing nature of IBD exposes family caregivers to considerable risk. Thus, the care burden of IBD patients' caregivers needs to be evaluated continuously and relieved through family-centered interventions.
SUMMARY: Background: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. Materials and Methods: This was a cross‐sectional study employing convenience sampling. Patient–caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health‐related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. Results: Sixty patient–caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). Conclusion: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.
Background: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. Methods: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living). Results: The following predictors of the global QoL of the MS patients were identified - age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (R-2 = 0.569;F= 32.900;p< 0.001). The following predictors of the global QoL of caregivers were identified - age, emotional functioning, spiritual_nonreligion functioning, patient's QoL, and feeling of care (R-2 = 0.431;F= 18.690;p< 0.001). Conclusion: Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.
Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life.; Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions.; Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions.; Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context.; Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers' roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living.; Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.
Background: Caregiving to patients with epilepsy (PWE) is often very stressful for family caregivers and puts a heavy caregiver burden (CB) on them. The aim of this study was to evaluate the effects of Fordyce's fourteen Fundamentals for Happiness Program on happiness and CB among the family caregivers of PWE. Methods: This randomized controlled trial was conducted on seventy family caregivers of PWE. Participants were purposively recruited from the Comprehensive Health Center in Shahrekord, Iran, and randomly allocated to either an intervention or a control group. Participants in the control group received conventional health-related educations in four one-hour group sessions, while participants in the intervention group received the Fordyce's fourteen Fundamentals for Happiness Program in eight one-hour group sessions. Happiness and CB in both groups were assessed at three time points, namely before, immediately after, and two months after the intervention. Data were analyzed using the SPSS program (v. 18.0). Findings: There were no significant differences between the control and the intervention groups regarding participants' demographic characteristics and their pretest mean scores of happiness and CB (P > 0.05). The mean scores of happiness and CB in the control group did not significantly change (P > 0.05), while the mean score of happiness significantly increased and the mean score of CB significantly decreased in the intervention group across the three measurement time points (P < 0.05). Consequently, the mean score of happiness in the intervention group was significantly greater than the control group and the mean score of CB in the intervention group was significantly less than the control group at both posttests (P < 0.01). Conclusion: The Fordyce's fourteen Fundamentals for Happiness Program is effective in significantly increasing happiness and reducing CB among the family caregivers of PWE. Healthcare providers and policy makers can use this program to reduce problems among these family caregivers.
BACKGROUND: In 2014, the Ministry of Health of Ontario, Canada, approved a program of public funding for specialist-prescribed mechanical insufflation-exsufflation (MI-E) devices for home use by individuals with neuromuscular respiratory insufficiency. Since 2014, 1,926 MI-E devices have been provided, exceeding device-use projections. Few studies describe the initial and ongoing education and support needs of home MI-E users and their family caregivers. This study aimed to explore the requirements of initial and ongoing education and support for MI-E device use, user confidence, and barriers and facilitators to home MI-E. METHODS: We conducted semi-structured interviews with new (< 6 months) and established (6-48 months) MI-E users and family caregivers. Device users rated their confidence on a numeric rating scale of 1 (not confident) to 10 (very confident). RESULTS: We recruited 14 new and 14 established MI-E users and caregivers (including 9 dyads), and we conducted 28 interviews. Both new and established users were highly confident in use of MI-E (mean +/- SD scores were 8.8 +/- 1.2 and 8.3 +/- 2.1, respectively). Overall, the subjects were satisfied with their initial education, which consisted of a 1-2 h one-on-one session at home or in the clinic with a device demonstration and hands-on practice. Subjects viewed hands-on practice and teaching of caregivers as more beneficial than written materials. Ongoing support for device use was variable. Most subjects indicated a lack of specific follow-up, which resulted in uncertainty about whether they were using the MI-E device correctly or whether MI-E was effective. Facilitators to device utilization were ease of use, initial training, support from formal or informal caregivers, and symptom relief. Barriers were inadequate education on MI-E purpose, technique, and benefit; lack of follow-up; and inadequate knowledge of MI-E by nonspecialist health providers. CONCLUSIONS: The current model of home M1-E education at initiation meets user and caregiver needs. Better ongoing education and follow-up are needed to sustain the benefits through assessment of MI-E technique and its effectiveness.
Background: Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary.; Aim: The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving.; Method: Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018. We searched the databases EMBASE, MEDLINE (PubMed), PsycINFO, and CINAHL. Study selection, quality assessment, and data extraction was performed independently. Both quantitative and qualitative studies were included. Of the included studies, we additionally screened citing literature in Google Scholar (citation tracking). We linked the narrative synthesis to four stages of caregiving described by Williams and colleagues and used descriptive inductive thematic analysis to structure data within the stages.; Results: From 3275 abstracts screened, 48 manuscripts met our inclusion criteria. Our data analysis shows that needs differ across the four caregiving stages. While the stage of bereavement (stage 4) includes too little data for separate themes, themes for needs after diagnosis (stage 1), and terminal stage (stage 3) could be specified. As the maintenance (stage 2) stage comprised of themes relevant across the caregiving course, it became an overall stage.; Discussion: Healthcare professionals need to pay attention to current caregiving stages to provide support for informal caregivers. Further research is needed to tease out support needs for the bereavement phase.
Purpose: Dysphagia is a debilitating condition with widespread consequences. Previous research has revealed dysphagia to be an independent predictor of caregiver burden. However, there is currently no systematic method of screening for or identifying dysphagia-related caregiver burden. The aim of this study was to develop a set of questions for a dysphagiarelated caregiver burden screening tool, the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES), and pilot the tool to establish preliminary validity and reliability. Method: The questionnaire was developed through an iterative process by a team of clinical researchers with expertise in dysphagia, dysphagia- related and general caregiver burden, and questionnaire design. A heterogenous group of 26 family caregivers of people with dysphagia completed the CARES, along with the Eating Assessment Tool (EAT-10), the International Dysphagia Diet Standardisation Initiative Functional Diet Scale ( IDDSI-FDS), and the Zarit Burden Interview (ZBI). Information on construct validity, item fit, convergent validity, internal consistency, and reliability was determined via Rasch analysis model testing, Cronbach's alpha, and Spearman's rho calculations. Results: The final CARES questionnaire contained 26 items divided across two subscales. The majority of the questionnaire items fit the model, there was evidence of internal consistency across both subscales, and there were significant relationships between dysphagia-specific burden (CARES) and perceived swallowing impairment (EAT-10), general caregiver burden (ZBI), and diet restrictiveness (IDDSI-FDS). Conclusions: Results from the current study provide initial support for the validity and reliability of the CARES as a screening tool for dysphagia-related burden, particularly among caregivers of adults with swallowing difficulties. While continued testing is needed across larger groups of specific patient populations, it is clear that the CARES can initiate structured conversations about dysphagia-related caregiver burden by identifying potential sources of stress and/or contention. This will allow clinicians to then identify concrete methods of reducing burden and make appropriate referrals, ultimately improving patient care.
Background/Aims: Caregivers perform an important role but caring affects other roles they perform, resulting in poor time management and reduced quality of life. This study aimed to compare the time-use patterns and self-efficacy of caregivers of two groups of patients with chronic disease: those with a diagnosis of mental illness and those without a diagnosis of mental illness. Methods: Family caregivers of patients with a chronic disease who were aged between 20–60 years, resident in Arak, not taking care of another patient and literate were eligible to participate. The presence of mental illness was based on a psychiatrist's diagnosis at least 6 months before the study. The Mothers' Time Use Questionnaire, Sherer Self-efficacy Scale and a demographic questionnaire were used to capture data relating to time-use, self-efficacy and participant characteristics. Data were analysed using independent t-test and Mann–Whitney U test to identify and compare time-use patterns and self-efficacy. Results: There were no significant between-group differences in demographics or mean time-use scores in six domains (rest/sleep, leisure, housework, work/occupation, social participation and satisfaction with time management). Self-care time-use scores (time, quality, importance and enjoyment) were significantly higher for caregivers of patients with chronic disease with a diagnosis of mental illness. Patient care time-use scores were significantly higher for caregivers of patients with chronic disease without a diagnosis of mental illness. Mean self-efficacy score was significantly higher in the group caring for patients with a diagnosis of psychiatric disease. Conclusions: Chronic physical illnesses may result in greater dependence on caregivers than mental illness, increasing the amount of time spent on care and reducing caregiver self-efficacy.
Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care.
Background: Managing the burden of care for patients with chronic debilitating diseases is an important issue. Herein, we assessed the burden in primary family members caring for uremic patients on maintenance peritoneal dialysis. Methods: One hundred seventy caregivers and 170 patients were recruited. Self-perceived scoring along the Zarit Caregiver Burden Scale (ZCBS), World Health Organization Five-item Well-Being Index (WHO-5), and Warwick-Edinburgh Mental Well-being Scale (WEMWBS) were determined for caregivers. Results: There was an inverse relationship between ZCBS and WHO-5 or WEMWBS scores in caregivers, suggesting that the higher the burden, the lesser the self-perceived well-being. One hundred two of 170 caregivers (60%) reported mild to moderate burden, indicating a common presence of mild to moderate caring-related mental and physical stress. Moreover, 31 caregivers (18.2%) reported moderate to severe burden. Several patient disease factors, including diabetes and frailty, increased caregiver burden, while insurance coverage and out-of-pocket medical costs were also positively correlated. Caregivers who lived with patients and spent longer hours in caring-related activities had higher burden scores, while regular exercise seemed to partially alleviate the burden. Conclusion: Our study clearly showed that caring for patients with maintenance peritoneal dialysis caused physical, mental, and social burden in family caregivers, with the extent of the stress being influenced by patients' disease severity and other demographic factors in both patients and caregivers.
The goal of a LVAD is to extend life expectancy, improve physical strength and quality of life, and allow individuals to be discharged home. When making decisions for a family member to receive a LVAD, caregivers are asked to confront a sophisticated technology with not only the potential to extend life expectancy and improve quality of life but also risks for complications and burdens. The caregiver may place different values on the quality of life (e.g., symptoms, physical function, social interactions) and burdens of therapy (e.g., lifestyle adjustment, independency, direct and indirect costs, caregiver burden) than the values of The Other.
Background In 2017, ostomy patients gained access to ostomy products in community pharmacies that are fully reimbursed by the Portuguese National Health Service. This impacted the daily lives of people with ostomy and opened a new market of products and services for pharmacies. However, little is known about the sociodemographic and clinical profile of ostomy patients. This study aims to characterize people with ostomy and their caregivers, evaluate access and satisfaction with the pharmacy and explore participants' expectations regarding services and counselling. Methods This was an observational, cross-sectional, multicentre study involving pharmacy users who acquired ostomy products in Portuguese community pharmacies. Data were collected through a confidential self-report questionnaire between June and August 2019. Results Approximately 56% of the participants were ostomy patients, of whom 65.9% were men. The average age of participating ostomy patients was 65.5 years old (SD = 12.9), and near 80% were retired/pensioners. Caregivers were mostly women (81.7%). More than half of the caregivers were employed and acquired products for a direct family member. Three in every four surgical interventions were consequences of cancer. Intestinal ostomy was the most common intervention (78.3%). More than 93% were satisfied with the acquisition of ostomy products at the pharmacy. Approximately 48.2% of ostomy patients received care from a specialized nurse. Conclusion This study describes the profile of people with ostomy and their caregivers who attend community pharmacies in Portugal. Participants' perceptions of the utility of different proposed services and pharmacist knowledge, as well as the low coverage of ostomy nursing care, highlight the opportunity for an extended role of pharmacists among this group.
Using a sample of 312 people in a romantic relationship with a partner who has a spinal cord injury (SCI), this study examined the separate and combined effects of caregiving tasks, resilience, and received support on the participant's level of psychosocial distress. We also tested whether such distress might mediate the effect of the predictors on romantic relationship closeness. Results supported the beneficial effects of both resilience and receiving high-quality support, although the timing of the injury moderated these effects. Injuries sustained after relationship initiation particularly threaten well-being and closeness and, along with the burden of caregiving tasks, alter the extent to which received support and resilience are associated with health and relationship benefits. These results suggest that support providers should be sensitive to the context of the SCI and, for scholars, indicate the importance of further theorizing context in the theory of resilience and relational load.
Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10). Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.
Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms. Method(s). With multi-stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, a validated 5-faces severity scale, and an easy-touse tracking system with phone numbers of family/ friends/clinicians to contact if symptoms worsened. We recruited English-speaking patients $65 years old and their caregivers from a home-based geriatrics program in San Francisco. Using validated questionnaires at baseline and 1-week, we assessed patients' symptoms, patients' and clients' self-efficacy with SA (5- point Likert scale), and acceptability (i.e., recommend to others). We used Wilcoxon signed-rank tests. Results. Eleven patient-caregiver dyads participated. Patients were 84.7 years old (SD 5.7), 81.8% women, and 27.3% non-white. From baseline to 1-week, the mean number of symptoms decreased (3.7 (1.5) at baseline to 2.6 (1.8) at follow-up, p¼0.03). Specifically, the number of patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 (0.3) to 4.8 (0.3), p¼0.09). Patients found the symptom illustrations easy-to-use (8.7 on 10-point scale), but the faces scale less so (7.3/10) because it provided ''too many choices.'' Caregivers liked the SA-Toolkit because it was ''easy to use''; nearly all (10/11, 90%) would recommend it to others. Suggested improvements included personalizing materials according to patients' symptoms. Conclusion(s). The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in symptom assessment. Acceptability of the Toolkit was high among both patients and caregivers. Impact. A SA-Toolkit is feasible and may help reduce suffering in frail, older patients.
Objectives: To understand patients' and caregivers' experiences with and perceptions of a federally-mandated program within the Department of Veterans Affairs (VA) that provides educational and monetary support to family caregivers of post-9/11 Veterans.; Methods: Twenty-six Veterans and their family caregivers were recruited to participate in individual and dyadic interviews. Interviews lasted between 60 and 90 min and took place between August 2016 and July 2018 in Oregon and Louisiana. Interviews were recorded, transcribed and coded by multiple team members. Recurrent themes and categories were identified through close examination of coded text and comparison within and across transcripts.; Results: Three main themes emerged in the data: 1) appreciation of the caregiver program for validating and compensating family caregiver work; 2) perception that some caregiving activities are less visible, and thus go unrecognized and uncompensated; 3) concern about loss of benefits.; Conclusions: Implications and policy recommendations for programs to support family caregivers, both within the VA and in the context of the broader national movement to support family caregivers, are discussed.
This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.
Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it. Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics. Multivariate regression analysis was used to identify correlates of patient and caregiver stigma. Results: Forty-three patients with PNES and 165 patients with ES were recruited. Compared with patients with ES, patients with PNES had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health, and fewer antiseizure medications (ASMs). A total of 76.5% of patients with PNES and 59.5% of patients with ES felt stigmatized. Patient stigma level was higher in patients with PNES compared with those with ES, and it was negatively associated with patient quality of life (QOL). Additionally, 28 caregivers of patients with PNES and 99 caregivers of patients with ES were recruited. There were no significant demographic, caregiving, or psychosocial differences between the two caregiver cohorts. Seventy-two percent of caregivers of patients with PNES and 47% of caregivers of patients with ES felt stigmatized. Caregiver stigma level was also higher in caregivers of patients with PNES compared with caregivers of patients with ES, and it was negatively associated with patient QOL and positively associated with patient and caregiver anxiety. Conclusion: Compared with those with ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QOL emerges as a consistent correlate of that stigma.
Aims: To provide an understanding of medical care adherence factors as reported by caregivers, adolescent, and adult patients with sickle cell disease and to analyse those concerns to identify barriers and facilitators about medical care adherence. Three topics influenced medical care adherence: the disease itself, therapeutics, and the healthcare system. This study will focus on the first topic. Design: Qualitative explorative study, using semi‐structured and life‐experience interviews and manual inductive content analysis. Methods: From December 2016 – March 2017, one semi‐structured interview was conducted by a researcher with each of the 15 adolescent patients, 10 adult patients, and 19 caregivers in a French public hospital. Interviews were audio‐taped and transcribed before a content analysis. Perceptions were classified into barriers and facilitators of medical care adherence. Results: This article presents disease perceptions of caregivers and patients (adolescents and adults): daily management and social representations. These perceptions differ among parents, adolescent patients, and adult patients. However, all report important disease‐related "limitations" in their lives. The objective for adults (parents and patients) is to "live with the disease" and to achieve this, they find coping resources. Two major resources expressed by adults emerged: social resources (support from friends, patients' association, and social visibility) and disease knowledge (theoretical and derived from experience). This is not the case of adolescents for whom social normality was the main concern. Conclusion: Care management adherence is partly based on coping with the disease. Given the lower number of facilitators expressed by adolescents, it is essential to propose interventions in this population. It will help them cope with the disease and, consequently, optimize care management adherence. Impact: Showing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.
Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD. This study aimed to explore the relationship between distress and PA in informal caregivers of patients with COPD, and the influence of caregivers' (age, sex) and patients' (age, sex, lung function) characteristics and caregiving duration on this relationship. A cross-sectional study was conducted with 50 caregivers (62.7 ± 9.8 years, 88% female; 78% caring for a spouse/partner; 38% caring >40 h/week; patients' FEV1=45.2 ± 21.3% predicted). Data collection comprised questions related to the caregiving context, distress related to caregiving burden assessed with the Informal Caregiver Burden Assessment Questionnaire (QASCI; total score, 7 subscales), and self-reported PA with the Habitual Physical Activity Questionnaire (HPAQ). Spearman's correlation coefficient and linear regressions were used. Significant, negative and moderate correlations were found between the QASCI (28.5 ± 19.8) and the HPAQ (5.2 ± 1.3) (ρ=-0.46; p = 0.01); and between the HPAQ and some QASCI subscales (emotional burden ρ=-0.47; implications for personal life ρ=-0.52; financial burden ρ=-0.44; perception of efficacy and control mechanisms ρ=-0.42; p < 0.01). Two linear regression models were tested to predict QASCI total score including as predictors: 1) HPAQ alone (p = 0.001; r2=0.23); 2) HPAQ and caregiving h/week (p < 0.001; r2=0.34). Higher self-reported PA levels are related to decreased levels of distress associated with caregiver burden in COPD caregivers. Duration of caregiving may negatively influence this relationship.
Aim: The study was conducted to examine the relation between self‐efficacy in patients with chronic obstructive pulmonary disease (COPD) and caregiver burden. Material and methods: This descriptive, cross‐sectional study included 200 patients with stage II and III COPD presenting to hospital between June and November in 2017 and their caregivers. Data were gathered with a questionnaire, COPD Assessment Test and COPD Self‐Efficacy Scale from the patients. A questionnaire and Caregiver Burden Scale was used to collect data from the caregivers. Obtained data were analysed with the descriptive statistics numbers, percentages, mean, median and standard deviation. Spearman's correlation analysis was utilised to examine the relation between paired groups. Results: The mean age of the patients with COPD was 63.53 years and 51.1% of the patients were female. The mean age of the caregivers was 48.88 ± 14.09 years. 54.4% of the caregivers were aged 40–60 years, and 59.9% of the caregivers were female. The mean score was 26.97 ± 5.25 for COPD Assessment Test and 2.32 ± 0.43 for COPD Self‐Efficacy Scale. Of all the caregivers, 64.8% had mild caregiving burden and 18.1% had moderate caregiving burden. The mean score for Caregiver Burden Scale had a significant, moderate relation with the mean score for the subscale physical effort in COPD Self‐Efficacy Scale (r = −0.42; p < 0.01) and had a significant, weak, negative relation with the mean total score for COPD Self‐Efficacy Scale and the mean scores for its subscales. There was a significant, moderate, positive relation between the mean scores for Caregiver Burden and COPD Assessment Test (r = 0.51; p < 0.001) and a significant, negative relation between the scores for COPD Self‐Efficacy Scale and its subscales and the scores for CAT (r = −0.26 ‐ r = −0.52; p < 0.05). Conclusion: As self‐efficacy in COPD patients increases, their health and daily lives are affected less by COPD and caregiver burden decreases.
Background: informal caregivers have a high risk of suffering from diseases derived from the chronic stress to which they are subjected for their dedication to the care of their relatives. Such stress has a direct influence on the person cared for, mainly affecting the quality of their care. Therefore, the aim of the present study is to assess the association of caregiving on physical and mental perceived health in family caregivers of dependent adults with complex chronic diseases.; Methods: a prospective longitudinal cohort study, with a follow-up period of 36 months (HUELLA cohort). The exposed cohort will be formed by family caregivers of dependent patients with complex chronic pathologies. The unexposed cohort will be taken from the general population adjusted for age, sex and health. Outcome variables will include attendance to health services, consumption of psychoactive drugs, dedication to care (only in exposed cohort), concession of the Act on Promotion of Personal Autonomy and Care for dependent persons (exposed only), perceived physical and mental health, depression level, burden level and new diagnosis of chronic pathology of the caregiver during the study.; Results: the expected results will be applicable and will incorporate improvements to the usual health system clinical practice, providing feedback to professionals dedicated to the provision, planning and design of services to family caregivers, as well as to groups and organizations of caregivers.; Conclusions: investments in preventing low-quality informal care are key, mainly through early identification and interventions to support caregivers who suffer from stress, anxiety or depression.
Objectives: • Critique, from the view of providers, the potential benefits and drawbacks of integrating family caregivers into clinical encounters. • Describe provider attitudes, beliefs and ethical and clinical considerations that may affect the integration of family caregivers into clinical encounters. Importance: Family caregivers frequently accompany patients to clinical encounters, particularly when dealing with serious illnesses. Family caregivers, however, are not often invited to be active participants in clinical encounters. Little is known about provider perceptions on engaging caregivers in clinical encounters. Objective(s): Our aim was to better understand providers' perceptions on engaging caregivers during clinical encounters. Method(s): Twenty providers in primary, specialty, or palliative care from our institution in 3 distinct geographic areas of the United States (southeast, midwest, and southwest) were invited by email to participate in individual interviews (via telephone or in-person). Using a standard interview guide, providers were asked about their previous experiences with caregivers in clinical encounters and their views about integrating caregiver assessment into clinical encounters. Data were inductively analyzed using a thematic approach. Results: We identified 3 themes among this sample of providers regarding: 1) the appropriate role of caregivers in the clinical encounter; 2) effectively managing the conversation when caregivers are involved; and, 3) the systemic barriers to caregiver integration. Providers chiefly view caregivers as sources of supplemental information or as absorbers or reinforcers of clinical instructions for care at home. Providers voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patent without having clinical authority to treat the caregiver or the adequate resources to provide help to the caregiver. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical visit. Conclusion(s): These findings provide insight into provider attitudes on the family caregivers' role in clinical encounters, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings. Impact: Further work is needed to identify the best strategies to overcome barriers to integrating caregivers in clinical encounters in order to improve the holistic care of patient-caregiver units.
The aim of this study was to prepare a Japanese version of the "Satisfaction of Treatment among Caregivers of Dependent Type 2 Diabetic Patients" (STCD2-J) questionnaire, which is used to assess the satisfaction of family caregivers with respect to the treatment for elderly patients with type 2 diabetes mellitus who require support. In addition, the reliability and validity of the STCD2-J questionnaire were analyzed. A Japanese version of the original STCD2 questionnaire was prepared, revised, and back-translated; the back-translated version was sent to the authors of the original version for confirmation. Family caregivers of patients with type 2 diabetes mellitus aged ≥65 years who regularly underwent medical examinations at the diabetes mellitus outpatient clinic of Ise Red Cross Hospital were included. Cronbach's α coefficient was calculated to assess internal consistency. Exploratory factor analyses were performed to assess construct validity, and Pearson's correlation coefficients between STCD2-J score and HbA1c as well as the degree of satisfaction with patients' blood glucose levels, depression, and negative self-assessment of nursing care were calculated to assess criterion-related validity. This study included 208 individuals (55 males and 153 females). Cronbach's α coefficient was 0.88. Factor analyses showed a single-factor structure both with and without rotation. The STCD2-J scores were significantly inversely correlated with HbA1c (r = − 0.27 , P < 0.001). Significant correlations were observed between the STCD2-J scores and degree of satisfaction with patients' blood glucose levels (r = 0.43 , P < 0.001), depression (r = − 0.20 , P = 0.003), and negative self-assessment of nursing care (r = − 0.19 , P = 0.004). The reliability and validity of the STCD2-J questionnaire were confirmed. The STCD2-J questionnaire can be used in Japan as a tool to assess the satisfaction of family caregivers with the treatment of elderly patients with type 2 diabetes mellitus requiring support.
Providing caregiving to family members with multiple chronic conditions (MCCs) can interfere with employment status and have a negative impact on caregivers' well-being. The qualitative analysis of 13 Canadian employees who were also simultaneously providing unpaid care (carer-employees) identified three themes that highlight work interference, negative impacts on well-being, and workplace culture. The findings call for employers to provide health promotion strategies and a supportive workplace culture that reduce workplace interference while being responsive to the unique needs of carer-employees.
Patients who have multiple chronic conditions (MCCs) and their informal caregivers experience poorer health-related quality of life (HRQOL). Perceived social support has been shown to influence HRQOL. This study aimed at identifying the differences between patients' and caregivers' physical and mental HRQOL; and determining the association between their perception of social support from different sources, and their own and their dyad partner's HRQOL. Patients with MCCs and their caregivers (345 dyads) were enrolled in a multicenter cross-sectional study conducted in Italy. The Multidimensional Scale of Perceived Social Support measured perceived social support from family, friends, and significant others, and the 12-Item Short-Form Health Survey measured the physical and mental component of HRQOL in dyads. The dyadic analysis was conducted using the Actor-Partner Interdependence Model through structural equation modelling. Family support perceived by each member of the dyad was associated positively with their own mental HRQOL, and that family support perceived by caregivers was also associated positively with patients' mental HRQOL. Greater family support perceived by caregivers was also associated with better physical HRQOL in both caregivers and patients. Moreover, greater friend-support perceived by each member of the dyad was positively associated with own physical HRQOL. The study suggests the reciprocal influence of perceived social support from family and friends on physical and mental HRQOL in MCC dyads. Healthcare professionals should identify those people who are the main sources of support for each member of the dyad, and develop care plans that promote the maintenance and enhancing of this support. • Social support is linked to patient-caregiver dyad's HRQOL in multiple chronic conditions. • Types of support providers have inter- and intrapersonal effects on HRQOL. • Family support perceived by caregivers is associated with quality of life of chronic patients. • Perceived friend support is associated with patient-caregiver dyads' HRQOL. • Care from a partner is associated with better mental quality of life in the chronically ill.
Objective: This study investigates whether the adult attachment styles of support partners in a cardiac rehabilitation context predict their use of overprotective support strategies, and whether such overprotection in turn predicts lower self-efficacy and poorer program attendance in cardiac rehabilitation patients. Research Method: Participants were 69 partner–patient dyads, mostly older adults (mean age = 65 years) in long-term relationships (M = 35 years). During the first week of a 10-week cardiac rehabilitation program in a midsized rural hospital, participants completed self-report questionnaires that were used to assess partners' attachment styles and levels of overprotection, as well as patients' health-related self-efficacy. Attendance at each session of the program was then tracked by cardiac rehabilitation staff members. Results: A moderated mediation model using bootstrapping showed that when partners were insecurely attached (high in both attachment avoidance and attachment anxiety), a mediational model held, such that more insecure partner attachment predicted more extensive use of overprotective support strategies, which in turn predicted lower patient self-efficacy for exercise and less-frequent program attendance. Implications: Implications for training support partners in more-effective support strategies are discussed. Impact and Implications: This article identifies support partners' attachment insecurity as a potential risk factor for offering overprotective support in a cardiac rehabilitation context; demonstrates that partners' attachment styles are associated with their use of support strategies, which in turn are associated with important patient outcomes, assessed via self-report (self-efficacy) and objective measures (program attendance); and responds to a call to better understand the dynamics of more-effective versus less-effective partner support strategies, as a means to improve training. Awareness of these dynamics may help to train partners in use of more effective support strategies, and/or help buffer patients when they receive less-effective forms of support.
The article focuses on Parkinson's disease (PD) is quite challenging to deal with, for patients and their caregivers alike. Topics include the caregivers help PD patients deal with their symptoms even before a formal diagnosis is made, the family member while going through the tedious process of diagnosis and treatment to palliative care, and the PD commonly affects patients in the age when they are transitioning to retirement.
This study aimed to answer three main questions with respect to home caregivers for people with cardiovascular disease: (1) Are the needs of home caregivers being met (and at what level)?; (2) what is the level of emotional exhaustion, depersonalization, and personal accomplishment of home caregivers?; (3) what sociodemographic variables of home caregivers are related to unmet needs and level of emotional exhaustion, depersonalization, and personal accomplishment? The study used the Camberwell Modified Needs Assessment questionnaire and the Maslach Burnout Inventory questionnaire. This study reports on 161 informal home caregivers of patients with cardiovascular disease. We found that younger caregivers were less likely to report unmet needs ( p = 0.011), and showed lower rates of burnout on depersonalization and emotional exhaustion. In addition, caregivers who worked more often reported higher levels of met needs ( p = 0.022), and showed lower rates of burnout on depersonalization ( p = 0.005) and emotional exhaustion ( p = 0.018). Subjects residing in urban areas were more likely to report unmet needs ( p = 0.007), and showed higher rates of burnout on emotional exhaustion ( p = 0.006). Older caregivers who are unemployed and reside in cities should be offered programs to determine their unmet needs and to receive support.
Background: Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods: Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. Results: For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions: Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.
Sleep disturbances are a debilitating non-motor symptom in Parkinson's disease (PD) and negatively impact patients, their carers and the patient-carer dyadic relationship. This review outlines the phenomenology, as well as factors associated with and treatment of sleep disturbances, in PD patients and their informal carers. The following terms were used in four databases: Parkinson*, sleep* disturbance*, carer*, dyad*, intervention* and treatment*. Across the articles reviewed, the frequency of reported sleep disturbances in PD ranged between 60% and 98%. Common sleep problems in PD included insomnia, excessive day time sleepiness, REM sleep behavior disorder (RBD), sleep apnoea, periodic limb movements and sleep attacks. Within dyads, significant correlations were found with depression, anxiety and carer burden relating to night time care in particular. Despite the negative impact of sleep disturbance in PD, the evidence-base for treatment remains limited. While addressing individual factors associated with sleep disturbances, it is also important to emphasize the needs arising from the patient-carer dyadic relationship. While a number of non-pharmacological interventions were suggested in the literature, further well-controlled trials are still required. Multiple approaches are required to reduce sleep disturbances and associated burden in PD.
The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers. Data were collected at 12 and 60 months after PM implantation. The patients in the study were assigned to two different groups: remote monitoring (RM) and conventional monitoring (CM). The "Disability, personal autonomy, and dependency situations survey" (EDAD) was administered to collect information on sociodemographic characteristics, time, care difficulties, health status, professional aspects, and impact on economic, family, or leisure aspects of the main caregivers providing care to patients with pacemakers. After five years, 55 patients completed the study (RM = 21; CM = 34). The average age was 63.14 years (SD = 14.90), 96% of them were women, and the most predominant marital status was married (72%). Informal caregivers lived in the homes of the patients in 70% of cases, and 88% indicated that they had to provide care six to seven days a week. The average cost per patient during the monitoring period studied was 13.17% lower in the RM group than in the CM group, and these differences were not statistically significant ( p = 0.35). This study found similar results in the two groups under study with respect to sociodemographic characteristics, workload, time, and problems associated with health, leisure and family members. The costs associated with care were higher in the CM group; however, these differences were not statistically significant.
Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities. Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally. Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs). Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy. Conclusion: Family support is important to caregiving appraisals. Implications: There is a need for including family needs for services within assessments for services and within policy. Families provide a substantial amount of care for their family members with disabilities. More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care. Family caregiver support needs should be taken into account within policy and service assessments.
Between April 16th and May 5th 2020, the Irish Lung Fibrosis Association commissioned a survey of its stakeholders to gain a deeper understanding of how their daily and healthcare needs were being met during the Covid-19 pandemic. Caregivers were quite concerned about poor levels of awareness and lack of recognition of Idiopathic Pulmonary Fibrosis (IPF) as a serious condition. Several were experiencing stress and they found the support from ILFA very helpful. They also felt it would be useful for newly diagnosed patients and their caregivers to be pointed to ILFA immediately upon diagnosis.
Objectives Parkinson’s disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists’ perspectives on the challenges Parkinson’s disease presents for families and the strategies they use to improve communication and quality of life. Methods We conducted hour-long semi-structured interviews with 16 neurologists at 4 care delivery institutions in the San Francisco Bay Area, focusing on techniques neurologists use to support families through the Parkinson’s disease journey. Results Neurologists identified strategies for addressing caregiver–patient disagreements around symptom accuracy and negotiating driving safety. Family education is needed to contextualize patient symptoms and to identify psychosocial support resources. Unmet caregiver needs remain, particularly in the form of psychosocial support, respite care and support for unequal gender dynamics in the Parkinson’s disease caregiving experience. Discussion Family members of Parkinson’s disease patients face unique caregiving and interpersonal challenges due to the nature of the disease. Targeted education and structural support are needed to alleviate current burdens and allow for improved patient- and family-centered care.
Objective: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. Methods: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. Results: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. Conclusion: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. Practice Implications: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.
Supplemental digital content is available in the text. OBJECTIVE: The aim of this study was to explore the information needs and preferred sources of information of Korean family caregivers of patients with amyotrophic lateral sclerosis (ALS). METHODS: Family caregivers of patients with ALS (n = 108) completed a structured questionnaire to assess their information needs and preferred sources of information. RESULTS: Most of the caregivers obtained health information from Internet searches (89.8%) and healthcare professionals (85.2%). The source rated most helpful was healthcare professionals, and that rated least helpful was broadcast media. Family caregivers who were younger than 50 years and well educated and caregivers of bulbar-onset ALS patients had higher scores of information needs. CONCLUSION: Providing information through healthcare professionals and self-support groups could enhance family caregiver satisfaction. Family caregivers who are older and less educated need to be more empowered to be involved in information-based caring, and caregivers of patients with bulbar-onset ALS have substantial information needs.
Purpose of Review: The aim of this review is to discuss the recent literature relating to the involvement of informal carers and peer support in pulmonary rehabilitation.; Recent Findings: Informal carers and peer support have been identified by both patients and healthcare workers as a crucial component in the care of those with chronic respiratory disease at home. Pulmonary rehabilitation, a cornerstone in the management of patients with breathlessness, is limited in its clinical effectiveness by poor referral, uptake and completion rates. Engagement of informal carers and support from peers may help maximize the utilization of pulmonary rehabilitation.; Summary: This review highlights the need for more good-quality randomized controlled trials in identifying suitable interventions that may increase uptake and completion of pulmonary rehabilitation programmes. Qualitative studies have highlighted the potential for informal carers and peer support to play a key role in the design of research programmes, and in the delivery of pulmonary rehabilitation. This needs to be addressed in future research.
Introduction: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.; Methods and Analysis: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.; Ethics and Dissemination: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.; Prospero Registration Number: CRD42020155727.
While it is known that informal carers provide the majority of caregiving in Australia, there remains limited understanding of the challenges that regional carers face in their caring role and the impact of the caregiving role on carer well‐being. Objective: The aim of this study was to better understand the health status of caregivers as the person they care for was entering the National Disability Support Scheme. Design: This is a mixed‐methods study. Setting: The study was undertaken in regional New South Wales, Australia. Participants: Seventy‐five carers were enrolled into the study. All lived in regional New South Wales. Main outcome measure: The World Health Organization Well‐being Index was used for quantitative data collection, and semi‐structured interviews were undertaken for the collection of qualitative data. Result: Quantitative data indicated that carers from Aboriginal or Torres Strait Islander backgrounds and those from low socio‐economic status had significantly lower scores on the well‐being index. Two key qualitative categories were evident describing carer's journey to resilience by (a) adjusting to reality predominantly through cognitive reframing strategies and (b) carers accessing external supports. Conclusion: The health status of regional carers who are predominantly women is experiencing low levels of well‐being. While many of these carers have initiated successful coping responses to the challenges of caring, there is an urgent need to increase the supports available to this population. As the recent National Disability Support Scheme is embedded, it is of importance to monitor if there are improvements in the health status of carers over time.
Background/aims Multiple sclerosis is a progressive neurological disease that can significantly impact the psychosocial aspects of primary caregivers of individuals with multiple sclerosis. This study explored the process of social isolation among primary caregivers of individuals with multiple sclerosis in Kerman, Iran. Methods A grounded theory approach was employed to explore the various aspects of social isolation. Data were collected through unstructured and semi-structured interviews with 15 primary caregivers of individuals with multiple sclerosis, 13 individuals with multiple sclerosis and five health care providers who were selected based on purposeful and theoretical sampling. The data were analysed via constant comparative analysis. Results The core variable identified from the interviews was social isolation. Other concepts that were connected with this were: insufficient knowledge and awareness, escaping stigma, occupational difficulties, marital challenges and management of restrictions. Conclusions Social isolation can affect the wellbeing of primary caregivers of individuals with multiple sclerosis. Recognition and awareness of the process of social isolation and factors influencing it can be beneficial in designing theory-driven evaluation and intervention methods. It is recommended that rehabilitation specialists pay close attention to the common needs and interests of both individuals with multiple sclerosis and their primary caregivers.
Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.
Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.
Objectives Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing. Design Qualitative: focus groups, interviews and carer workshops.Setting Three UK MND specialist centres serving a wide range of areas. Participants Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years. Results Carers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers. Conclusions Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.
Family caregivers of patients with end‐stage renal disease (ESRD) experience significant caregiver‐related burden, yet the contribution of their functional health literacy (FHL) to caregiving burden has not been elucidated. We investigated the magnitude of FHL and caregiving burden and their association in a descriptive, correlational cross‐sectional study of family caregivers of Jordanian patients with ESRD (N = 88). The short versions of the FHL for Adults and the Zarit Burden Interview were used for assessment of caregivers. Demographic and clinical information of patients and their family caregivers were self‐reported. Of family caregivers, 41% had limited FHL and 38% experienced high caregiver burden. FHL and history of comorbidity in family caregivers predicted caregiving burden independent of demographic and clinical factors. Consideration of FHL in support interventions for family caregivers may minimize some of the high perceived caregiving burden, but clinical trials of such interventions are needed to confirm this conclusion.
Objective: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Methods: Data were collected via the South Australian Health Omnibus, an annual population‐based, cross‐sectional survey. Individuals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Results: Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48‐3.86), transport assistance (AOR = 1.89, 95% CI = 1.15‐3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14‐3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24‐3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30‐0.81) or dementia (AOR = 0.40, 95% CI = 0.21‐0.76) was associated with decrease in odds. Conclusions: Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.
Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.
The aim of this study was to explore and describe the lived experiences of persons providing home care for community-dwelling relative with heart failure (HF) in Jordan. Design: It was a phenomenological study. Methods: Data were collected through interviews with 29 participants and analyzed using a thematic analysis approach. Findings: Four core themes have emerged: caregiving as a mandatory responsibility, positive experiences, negative experiences, and factors influencing the quality of the experiences. Conclusion: Although the hallmark of the participants' experience was negative, they showed a strong commitment to caring for their ill relatives. Clinical Evidence: The findings underscore the need for frequent assessment and support of family caregivers.
Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients. Materials and Methods: The present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted in-depth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007. Results: Analysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies. Conclusion: The findings of the present study can be used to develop support programs that address family caregivers' problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis.
Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. Research design and methods Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. Results Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. Conclusions Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.
Background: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. Aims: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. Methods: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. Findings: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. Conclusion: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.
Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.
Aim: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design: A quasi‐experimental study was performed with repeated measures at baseline, after the intervention and 6 months post‐intervention. Methods: The study was carried out at seven primary care centres from 2015‐2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9‐week psychoeducational intervention, whereas the control group received a 5‐week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post‐intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6‐month post‐intervention measurement. Conclusion: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.
Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app-based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being.; Objective: This study aims to evaluate the effectiveness of a self-guided mobile app-based psychological intervention for people providing care to family or friends with a physical or mental disability.; Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed.; Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=-2.07; P=.04) and depressive symptoms (b=-1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=-1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=-0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58).; Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design.; Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170.
Background: It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. Methods: The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Results: Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0.001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. Conclusion: The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.
A large proportion of long-term care for people with disabilities and/or long-term health conditions is provided by unpaid carers, including young people, with potential impacts on their education, employment and health. Supporting carers is a focus of long-term care practice and policy in many countries. A key part of this support in England is through provision of services to the person with care needs (often called 'replacement' care). We aimed to explore the role of replacement care services in supporting young adult carers' health, education, and employment. We used a mixed-methods approach: self-completed questionnaires and in-depth follow-on interviews. We found ways in which services supported young adult carers but, contrary to previous research, receipt of services by the person with care needs was not associated with better reported carer outcomes in our survey. One key reason for this finding was that not enough services were received to meet care needs and alleviate unpaid caring to a level or type compatible with better outcomes. The wider economic and political context of our study, during fiscal austerity and cuts to social care budgets, and the particular circumstances of young adult carers may offer further explanations.
Lower extremity amputation as a treatment of diabetic foot ulcer is probably a major burden for the patient's family and friends, who typically act as caregivers and support the patient in coping with the physical disabilities and emotional distress. In the present prospective study, we investigated the effects of different lower extremity amputation levels for diabetic foot ulcer treatment on caregivers of patients with diabetes using the Zarit Burden Interview (ZBI‐12) scale. Patients with diabetic foot ulcers who underwent unilateral major amputation (above‐below knee) and minor amputation of foot (heel sparing) and their caregivers were requested to volunteer to participate in this study from June 2016 to December 2018. The ZBI‐12 form was completed immediately preoperatively and 3 and 6 months after postoperatively. In the minor amputation group, the mean age of the 51 patients was 72.1 years. In the major amputation group, the mean age of the 88 patients was 73.7 years. Both groups of caregivers of patients with minor amputation and major amputations showed a significant improvement in ZBI‐12 score when compared preoperatively and at 3‐ and 6‐month follow‐up visits. The mean ZBI‐12 score was significantly higher in the major than in the minor amputation group in preoperative and all postoperative visits. The absence of the ankle joint in the below‐ or above‐knee amputation renders it more difficult for the amputee to quickly learn the use of prosthesis, thereby increasing the burden of the patient and caregivers. We found that lower extremity amputation for the treatment of chronic diabetic foot ulcers has significantly favourable effect on the caregiver burden, and thereby heel sparing was considerably more effective for the caregiver burden.
Background Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. Methods A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. Results Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 +/- 1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. Conclusion Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.
Purpose: The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions: It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.
Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.
Background: There is a wide agreement that family and friends of people with aphasia (PWA) can play a crucial role in the rehabilitation of interpersonal communication. Therefore, speech and language therapists (SLTs) should include family and friends in the process of therapy. However, little has been said about the role of caregivers of severely disabled PWA in the rehabilitation of communication functions. Aims: To examine how caregivers of severely disabled PWA perceive their relationship and communication with PWA, how they facilitate communication with PWA, and whether the caregiver's personality and emotional intelligence modify the abovementioned processes. Methods & Procedures: The study involved 123 caregivers of severely disabled stroke survivors with aphasia. Participants took part in a structured interview based on a structured interview guide created for the purpose of this study. The standardized psychological questionnaires NEO Five‐Factor Inventory (NEO‐FFI) and Schutte Emotional Intelligence Scale (SEIS) were used. Outcomes & Results: The caregiver's positive attitude towards the PWA correlated with the active facilitation of communication. The personality traits of caregivers and their level of emotional intelligence were associated with the tendency to use certain techniques to facilitate communication with PWA. Conclusions & Implications: Caregivers' positive attitude towards PWA is beneficial for the rehabilitation of communicative functions. Personality traits and emotional intelligence could modify the caregiver's strategy of coping with aphasia‐related challenges and should be taken into consideration when providing support. What this paper addsWhat is already known on the subjectInterpersonal communication must by definition involve at least two people. Therefore, there are a lot of approaches in SLT where support is given not only to the PWA but also to the communication partners. The most important group is significant others, which is usually understood as family members and friends. There is an increasing recognition that SLTs should include them in therapy.
What this paper adds to existing knowledge: For those PWA who need constant care, caregivers may have a significant influence on the quality of communication. Their positive attitude towards PWA corresponds with more active facilitation of communication and can make rehabilitation more efficacious. Caregivers should be educated on the cognitive and behavioural aspects of aphasia and encouraged to look actively for a PWA's positive characteristics. Caregivers' personality traits play a role in facilitating communication. For example, caregivers with high agreeableness are more likely to enjoy providing care, while those with higher conscientiousness declare using more techniques to facilitate communication with the PWA. What are the potential or actual clinical implications of this work? Caregivers' personality traits play a role in caring. Their positive attitude towards PWA corresponds to more active facilitation of communication, which can lead to more effective rehabilitation. This should be taken into account when training caregivers. Training programmes should include cognitive and behavioural aspects of aphasia as well as emphasize the need to maximize the PWA's abilities.
Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome.Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.
Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.
Background: Family caregivers are critical partners in the plan of care of people with disabilities. The study aims to demonstrate the factor structure and internal consistency of the Caregiver Burden Inventory (CBI) among the studied caregivers of disabled persons and to determine the effects of patients' and caregivers' characteristics on the burden and its dimensions. Methods: A cross-sectional study among 260 family caregivers of disabled patients was carried out in a randomly chosen rural area, Minia, Egypt, 2019. Exploratory factor analysis (EFA) was conducted to determine the factorial validity of the CBI. Multiple linear regression was used to identify the significant factors affecting the burden. Results: Factor analysis resulted in a five-factor solution using 20 items (four for each dimension) accounting for 72.7% of the total variance. The CBI and its dimensions showed high internal consistency (Cronbach's alpha value > 0.70). Education of caregiver, family income, mental impairments, and mixed disabilities were significant predictors of total CBI burden. Conclusions: CBI is an effective multidimensional measure of the caregiver burden of disabled subjects. Caregivers experienced a distinct level of burden that is determined by caregiver and care recipient characteristics. Therefore, support and individualized counseling services should be optimized.
Introduction: Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. Methods: Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self‐reported burden. Results: Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. Conclusions: Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures.
Objectives: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. Data Sources: VA claims. Study Design: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). Data Extraction: May 2009-September 2017 Principal Findings: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. Conclusions: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care.
Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Results: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation = 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Conclusions: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers. Many caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences.
Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.
Introduction: Caring for patients with chronic disorders can lead to different problems for caregivers in physical, psychological, social, family, and financial domains. High levels of burden of care can make caregivers vulnerable to physical and psychological conditions and influence their quality of life. Therefore, the goal of the present study was to estimate the overall percentage of burden of care in caregivers of Iranian patients with chronic disorders. Methods: A total of 25 articles published from inception to February 2019 were reviewed. Search for articles was conducted in international (Scopus, Web of Science, and PubMed) and domestic (Scientific Information Database (SID) and MagIran) databases, using the following keywords: "Caregiver," "Burden," and "Iran," and their possible combinations. The data were analyzed using the meta-analysis method and the random effects model. All the analyses were performed using STATA, version 14. Results: The overall percentage of burden of care in caregivers of Iranian patients with chronic disorders was 53.28% (95% CI: 46.13-60.43). The highest percentage of burden of care was related to dialysis (62.75; 95% CI: 56.11-69.38), mental disorders (58.69; 95% CI: 49.70-67.69), and Alzheimer's disease (57.07; 95% CI: 46.23-67.92), respectively; and the lowest percentage of burden of care was related to diabetes (34.92; 95% CI: 18.01-51.82). Conclusions: Caregivers of Iranian patients with chronic disorders experience high levels of burden of care, especially those caring for patients undergoing dialysis, patients with mental disorders, and patients with Alzheimer's disease. Therefore, necessary measures need to be taken by Iranian health care officials to reduce burden of care in caregivers.
Informal caregivers of chronically ill patients often report burden and poor quality of life. This study aimed to evaluate the impact of caring on caregivers of amputated patients with type 2 diabetes and diabetic foot. A cross‐sectional study included a convenience sample of 110 caregivers who answered: the Burden Assessment Scale, the Depression Anxiety Stress Scales, the Social Support Satisfaction Scale, the Family Assessment Device, and the Short Form Health Survey. Multiple linear hierarchical regressions were performed to identify the variables that contributed to the burden and the physical and mental quality of life. Differences in burden as well as physical and mental quality of life were found, according to several caregivers' sociodemographic characteristics. Lower social support, more distress, and caregiver's perception of the impact of caring on the family dynamics contributed to burden. Lower distress and not having a chronic illness besides diabetes explained the physical quality of life whereas exercise and lower distress explained mental quality of life. To promote quality of life in caregivers and reduce the burden associated with caregiving, interventions should focus on social support, distress, and the practice of exercise. (Portuguese)
With increased attention to third-party disability, there is a need to evaluate how informal caregivers of people with aphasia participate in diverse life activities. Qualitative research has improved our understanding of experiences and priorities in this essential group of stakeholders. However, there has been limited effort to confirm results quantitatively and based on robust sample sizes. To characterize the balance and preference among home/work, leisure, and social activities for informal caregivers based on questionnaires that can also be used with people who have aphasia. Seventy caregivers for people with aphasia and 46 control participants who were not caregivers completed the Community Integration Questionnaire (CIQ) and a questionnaire version of the Life Interests and Values (LIV) Cards. CIQ scores did not differ statistically between groups, but the frequency of endorsed activities on the LIV Cards did. Whereas current engagement in home and community activities was similar for the two groups, caregivers reported doing significantly fewer activities in social, physical, and creative and relaxing categories. In contrast to the balance difference for their current life, participants in both groups agreed about wanting to do more social and leisure activities, with many activities rising to the top in both groups. Informal caregivers for people with aphasia experience a measurable difference between activities they currently do in their lives and activities they want to do. With modification, interviews and questionnaires intended for people with disability can provide a caregiver perspective on living with aphasia that may facilitate coordinated and relationship-focused intervention.
This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long-term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long-term care-giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5-year period. The study aimed to explore the experience of partners and other long-term family carers of people with spinal cord injury, and illuminate their daily lives, interests, concerns and caring approaches in this context. Data collection included in-depth interviews, a focus group and an on-line, password-protected research blog for participant narrative reflections. Findings revealed that the experience of long-term caring is complex, all-encompassing and lifelong. This experience is conceptualised here as lifetime active care which always involves what we describe as protective, negotiated, surreptitious and strategic caring. These dimensions of caring are interdependent and deeply embedded in the daily, active support provided by long-term carers of people with spinal cord injury. We argue that carers in this context are involved in processes that have, in other contexts, been conceptualised as narrative reconstruction and also that the four dimensions of caring identified involve significant emotion work. The social processes of lifetime active care may shed light on the experiences of family carers in other long-term care contexts.
This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.
Insomnia is a major comorbid symptom of chronic pain and is likely to affect caregiver burden. This cross-sectional study investigated the association between insomnia in chronic pain patients and family caregiver burden. Participants were 60 patients with chronic pain of >= 3 months duration. Demographic and clinical information were collected using the Athens Insomnia Scale (AIS), the Pain Disability Assessment Scale (PDAS), the Hospital Anxiety and Depression Scale (HADS), and a pain intensity numerical rating scale (NRS). Family members who accompanied chronic pain patients to hospital completed the Zarit Burden Interview (ZBI). Univariate regression analysis and multiple regression analysis were conducted to clarify the associations between ZBI scores and total/subscale AIS scores. Covariates were age; sex; pain duration; and scores on the PDAS, HADS anxiety subscale, HADS depression subscale, and NRS. Insomnia was independently associated with ZBI scores [beta: 0.27, 95% confidence interval (CI): 0.07-0.52, p = 0.001]. Scores on the AIS subscale of physical and mental functioning during the day were significantly associated with ZBI scores (beta: 0.32, 95% CI: 0.05-0.59, p = 0.007). In conclusion, the findings suggest that in chronic pain patients, comorbid insomnia and physical and mental daytime functioning is associated with family caregiver burden independently of pain duration, pain-related disability, and pain intensity.
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.
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.
Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction).
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.
Background: Heart failure (HF) causes high rates of hospital admissions. It is known that disease progression impacts the health-related quality of life (HRQoL) of both patients and caregivers, yet to date, this finding is based on cross-sectional studies with limited samples. Objectives: The study aim is to analyze the relationship between HF patients’ use of hospital services (a proxy for disease progression) and the HRQoL of their family caregivers. Methods: This work is a multicenter nested case-control study on a population of patients admitted to hospitals in southern Spain due to heart failure. The sample comprised 530 patient-caregiver dyads. Hospital admission data were retrospectively collected for the 5 years prior to inclusion in the study. Bivariate analyses and multivariate logistic regression were used to determine associations between patient deterioration and caregivers’ quality of life. Results: Patients’ use of hospital services was associated with worsened quality of life for family caregivers, with an overall OR of 1.48 (95% CI: 1.23-1.79). A positive correlation was found between patients’ perceptions of their physical health and the perceived mental health of caregivers (r = 0.127, p = 0.004) and between the perceived mental health of both (r = 0.291; p <0.0001). Conclusions: Greater use of hospital services by patients with HF is an independent predictor of deterioration of family caregivers’ HRQoL. The physical and mental components of patients’ and their family caregivers’ HRQoL interact and influence each other. Additional factors, such as the nature and intensity of care provided, also determine the worsening of a family caregiver’s HRQoL. Clinical Relevance: These results can be used to identify family caregivers of people with heart failure at risk of suffering a deterioration in their health-related quality of life. Increased use of hospital services is an independent predictor of the deterioration of the family caregivers’ health-related quality of life. Since clinical nurses are the main provider who gives support and education to family caregivers, they should be alert to this situation and individualize interventions to prevent this deterioration.
Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes).
Chronic kidney failure may contribute to the diminished quality of life of African American women who care for adults affected by the disorder. Few studies document the quality of life of these caregivers. For this descriptive correlational study, caregiver demographic, caregiver burden, depressive symptoms, family functioning, and quality-of-life self-report data from 75 African American women were extracted from an existing database. Ferrans’ Conceptual Model of Quality of Life guided the selection of study variables. Several significant associations were found. Caregiver education, employment status, marital status, and caregiver burden explained 63% of the variance in the caregivers’ quality of life. Findings support the need to explore further and design interventions to improve the quality of life of working African American women supporting individuals with chronic kidney failure.
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.
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.
Background: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. Methods: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ≥75 years with ESKD managed with dialysis or comprehensive conservative non-dialytic care (estimated glomerular filtration (eGFR) ≤10 mL/min/1.73m2) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. Results: Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76 years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index - 0.08, 95% CI - 0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. Conclusions: Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients.
Objective: The demands of providing unpaid care for someone with a disabling health condition (i.e., informal caregiving) can limit attention to one’s own health needs. Using a nationally representative survey, this study examines whether caregivers report different healthcare utilization relative to non-caregivers. Method: Participants in the Health Information National Trends Survey 5, Cycle 1 reported whether they provided unpaid care and healthcare utilization outcomes. Logistic regressions and chi-square tests with jackknife variance estimation were used. Results: Caregivers (N = 391) did not differ from non-caregivers (N = 2,894) in time since routine checkup or number of healthcare appointments in the past year (p values >.25). Among caregivers, number of healthcare appointments differed according to caregivers’ relationship to the care recipient (p =.04). Discussion: Findings suggest that informal caregivers access routine healthcare at a frequency similar to non-caregivers. Further research should determine whether this utilization is optimal, or whether increased utilization during caregiving might help attenuate caregivers’ longer term morbidity.
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.
This study models the economic costs of informal caring for people with back pain, using a microsimulation model, Care&WorkMOD, from 2015 to 2030. Care&WorkMOD was based on 3 national Australian Surveys of Disability, Ageing and Carers (2003, 2009, 2012) data sets for individuals aged 15 to 64 years. Estimated national income loss due to caring for people with back pain was AU$258 million in 2015, increasing to $398 million in 2030 (54% increase). Lost income tax revenue to the Australian government due to informal care of people with back pain was estimated to be AU$78 million in 2015, increasing to AU$118 million in 2030 (50% increase), and additional welfare payments were estimated to rise from $132 million in 2015 to AU$180 in 2030 (36% increase). Larger growth in lost income, compared with the increase in welfare payments, means that there would be an increasing income gap between those out of the labour force providing informal care and noncarers who are in the labour force, leading to increased inequality. Informal carers are defined as providers of informal, unpaid assistance to someone with a health condition, for at least 6 months. Informal carers of people with back pain who are out of the labour force incur substantial economic costs. Furthermore, back pain is a large economic burden on national governments. Policies addressing back pain prevention and treatment, and supporting carers, may offset government welfare expenditure, while improving the socioeconomic well-being of carers and patients.
Background: Family caregivers are important sources of care for hemodialysis patients. Although caring for a family member is a pleasant feeling, experiencing lots of physical and psychological caregiving burden influences the quality of life among family caregivers of hemodialysis patients. This study aimed to design and validate the quality of life inventory for family caregivers of patients on hemodialysis. Methods: A sequential-exploratory mixed method was conducted in Tehran, Iran, in 2017-2018. In the qualitative phase, the researcher conducted in-depth semi-structured interviews with 19 participants. Finally, a pool of 93 items was extracted from this phase. Then, psychometric properties such as face validity (Impact Score>1.5), content validity ratio (CVR>0.63), content validity index (Item Content Validity Index: ICVI>0.78, Scale Content Validity Index/Average: SCVI/Ave>0.8) and Kappa value (Kappa>0.7, internal consistency (Cronbach’s alpha>0.7), relative reliability (ICC:interclass correlation coefficient),absolute reliability (Standard Error of Measurement: SEM and Minimal Detectable Changes: MDC), convergent validity (Correlation Coefficient between 0.4-0.7), interpretability, responsiveness, feasibility, and ceiling and floor effects were assessed Results: The quality of life inventory for family caregivers of hemodialysis patients was developed with 34 items and five factors (namely patient care burden, conflict, positive perception of situations, self-actualization, fear, and concern). The findings confirm that the scale is acceptable regarding validity, reliability and other measurement features. Conclusions: This inventory is consistent with the health care status in Iran. Therefore, it can be used to measure the quality of life among family caregivers of hemodialysis patients.
Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long-term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty-four semi-structured interviews, with 25 participants were conducted, audio-recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self-identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.
Background: Multiple sclerosis has both high healthcare and social impacts. Objective: The purpose of this article is to analyse the available literature describing the economic burden of multiple sclerosis and to compare costs among studies examining main cost drivers. Methods: A literature search on studies published in English on cost-of-illness of multiple sclerosis included in this review using PubMed, the Cochrane Library, SCOPUS and Web of Science includes a retrospective horizon and it describes direct and indirect costs in patients categorized into severity groups. Results: Several papers were obtained from the database search (n=37). Additionally, results from “hand searching” were also included, where a wider horizon was considered. Cost estimates were compared among studies that used a societal perspective on costs, time-period studied, and year of price level used. The estimated total annual cost per patient in Europe is on average 40,300€ (n=20). In addition, differences by geographic areas and severity groups are also considered. All in all, the higher the severity, the higher the associated costs. Conclusions: This systematic review provides one clear finding: multiple sclerosis places a huge economic burden on healthcare models and societies due to productivity losses and caregiver burden. Moreover, costs of drugs were main cost determinants for less severe cases of multiple sclerosis and informal care and production losses for the most severe cases of multiple sclerosis.
Clinicians make decisions based on a large and complex patient information space in time pressured situations. Through continuity, experience, and privileged knowledge, the patient and caregiver(s) are in a position to support clinician decisionmaking through information delivery. For example, they may make salient relevant information or provide an integrated patient story to help clinicians overcome challenges of making decisions based on incomplete information. Recommendations of engaging patient/caregiver(s) include fostering a culture of listening by clinicians, speaking up by patient/caregiver(s), effective patient education and health information technology, and family-centered rounding and hand-offs. Using a lived experience, I illustrate the value of the potential impact of caregiver's informational contribution to patient safety.
Background Multimorbidity challenges the health‐care system and requires innovative approaches. In 2015, a 4‐month patient‐centred interdisciplinary pragmatic intervention was implemented in primary care with the aim of supporting self‐management for patients with multimorbidity.Objective To explore the perceptions and experiences of health‐care professionals, patients and their caregivers with a 4‐month patient‐centred interdisciplinary pragmatic intervention in primary care.Design A descriptive, qualitative study using semi‐structured interviews was conducted. Setting and participants A purposive sample of 30 participants was recruited from seven family medicine groups including patients, caregivers and health‐care professionals (HCPs). Interviews were analysed using Thorne's interpretive description approach. Results Findings were grouped into the benefits and challenges of participating in the intervention. The programme allowed patients to adopt realistic and adapted objectives; to customize interventions to the patient's reality; and to help patients gain confidence, improve their knowledge, skills and motivation to manage their condition. Interprofessional collaboration eased the exchange of information via team meetings and electronic medical records. Challenges were related to collaboration, communication, coordination of work and integration of newly relocated HCPs mainly due to part‐time assignments and staff turnover. HCPs part‐time schedules limited their availability and hindered patients’ follow‐up. Discussion and conclusion This intervention was useful and rewarding from the HCPs, patients and caregivers’ perspective. However, to ensure the success of this complex interdisciplinary intervention, implementers and managers should anticipate organizational barriers such as availability and time management of relocated HCPs.
Family caregivers play a pivotal role in supporting the efforts of healthcare providers for individuals with chronic diseases or disabling conditions ( Chi & Demiris, 2017 ). According to the National Alliance for Caregiving, in 2015 approximately 43.5 million adult family caregivers in the United States had provided unpaid care to family members in the previous 12 months ( National Alliance for Caregiving & AARP Public Policy Institute, 2015 ). As the population of aging Americans with chronic conditions continues to increase, the demand for family caregiver assistance will further rise ( Chi & Demiris, 2017 )...
Objectives: To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients’ and their families’ quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression. PROMs were seen as improving knowledge of residual symptoms and their impact post-TBI but not always accurately reflecting patients’ residual problems. Challenges to completing PROMs were cognitive impairment and lack of insight into condition. Perceived advantages of an electronic platform included easy data collection; flexibility; improving workflow; and the ability to send/ receive feedback and reminders easily. Suggested features of an electronic platform included simple layout, lay language, short questions, few items on the screen, and capability to send/receive feedback and additional information. Conclusion: There is a demand for reporting symptoms and their impact electronically, providing the layout is kept simple and feedback from clinicians is provided.
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.
Purpose of Review: In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being. Recent Findings: MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported. Summary: Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.
Background: People with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers. Methods: A systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method. Results: A total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of “access to care” was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis. Conclusion: People with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.
Drawing on a positive organizational scholarship (POS) approach, this paper presents findings from the first of a two-part study exploring user experiences of brilliant renal care within the Regional Dialysis Centre in Blacktown (RDC-B). A world café method was used engaging patients, carers, and staff in conversations about brilliance. Practitioners led the study, seeking to validate their claims that the RDC-B is an exemplar of brilliant care. Pragmatics dominated the fieldwork. Researchers and practitioners collaborated throughout the study, including hosting two world cafés. Key findings from the study are that the RDC-B is completely patient and relationally-centred, with high-quality connections, dedicated and competent staff providing a complete, responsive, and personalized service that is also like being in a family. Drawing on POS, we suggest that relational-centred care requires at the very least high-quality connections and relational coordination to build and sustain the levels of positivity identified in the RDC-B.
Caregivers of individuals with heart failure are at high risk for diminished quality of life because of the energy involved in providing necessary care. Caring for someone with chronic heart failure can affect caregivers' physical, psychological, and social health, collectively referred to as the burden of care, and may also affect family functioning. The current cross-sectional study aimed to investigate the relationship between caregiver burden and family functioning in caregivers of older adults with heart failure in southeastern Iran using the Zarit Burden Inventory and the Family Assessment Device based on the McMaster Model of Family Functioning. The Pearson correlation coefficient, independent t test, and analysis of variance were used to determine relationships among variables. Results showed a significant correlation between burden of care and total score of family functioning. Therefore, it is necessary to take measures to reduce burden of care for caregivers through education and support programs and to improve their family functioning and quality of life.
Aim: Considering that exercise programmes are related with a range of benefits for end-stage renal disease patients, we evaluated the association between haemodialysis (HD) patients’ involvement in intradialytic exercise training with the burden of their family caregivers. Methods: In this cross-sectional study, 60 caregivers of HD patients were recruited, 30 of them who cared for patients that regularly participated in an exercise programme during dialysis sessions and 30 caregivers who looked after patients undergoing usual HD treatment without intradialytic exercise. The caregivers were submitted to the Caregiver Burden Scale (CBS) and their quality of life (short-form-36 (SF-36)), anxiety and depression levels were assessed. Data were expressed as mean ± SD or median (interquartile range). Results: Multiple linear regression showed that the global CBS score was significantly associated with the exercise training after adjusting for age, educational level and anxiety level of caregivers, and dependency level of patients measured by the Lawton scale (coefficient of determination = 0.53; adjusted coefficient of determination = 0.48). Additionally, the caregivers of HD patients submitted to intradialytic exercise (42.0 ± 12.9 years, 33.3% male) compared to caregivers of patients undergoing usual treatment (50.7 ± 17.5 years, 26.7% male) exhibited less caregiver burden (global CBS score = 1.2 (0.2) vs 1.9 (0.7), P < 0.001), better quality of life (physical component score = 53.7 (9.6) vs 49.7 (16.2) and mental component score = 50.6 (17.5) vs 28.2 (32.5), P < 0.05) and lower anxiety (7.2 ± 4.2 vs 10.8 ± 4.1, P = 0.001) and depression levels (3.0 (3.3) vs 6.0 (5.3), P = 0.034), respectively. Conclusions: Intradialytic exercise training in HD patients was associated with lower burden of their family caregivers.
Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.
OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.
Survival following traumatic brain injury (TBI) has increased following advances in medical care. However, TBI survivors often experience significant deficits in cognitive function, psychological disturbance, and residual physical deficits. The caregivers for these survivors, who are often family members, may have limited capacity to provide the services and care that are required. Limitations in capacity may be attributable to poor preparation, increased burden, lack of appropriate resources, and lack of required support. Likewise, there are resultant consequences for the caregiver and the survivor. The purpose of this paper is to review issues associated with caregiver capacity including preparation, burden, burnout, and consequences. In the latter portion of the paper, assessment of caregiver readiness and understanding and intervention is described (as well as current limitations). The final portions of the paper describe future directions, the call for increased research, and medicolegal implications.
Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505425.
BACKGROUND: Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families. METHODS: The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years. The study used 2 subscales of the Berlin Social Support Scale (perceived availability of social support and need for social support) and the World Health Organization Quality of Life questionnaire for the assessment of QOL. RESULTS: QOL in MS is lower compared with that of their caregivers in all dimensions except the social domain (P < .001, r = 0.54-0.64). A higher need for social support was experienced by caregivers. The need for support in this group is affected by 3 predictors: QOL in the environmental domain and in the physical domain as well as their subjective health. An improvement in QOL in all the domains is related to an increase of perceived available support, in both the group of patients and that of their caregivers (P < .05, ρ = 0.28-0.59). CONCLUSIONS: Perceived available support is of great importance for both patients and their caregivers to enable them to function better in the physical, mental, social, and environmental domains of their QOL, where social relationships play a predictive role.
Heart failure (HF) affects the lives of patients as well as their family members, who are a fundamental source of support for patients. During the last 2 decades, researchers have increasingly given attention to caregivers of patients with HF worldwide. In 2014, the National Institute of Nursing Research addressed the significance of the science of caregiving. Since then, each year about 100 articles related to caregiving in HF have been published by researchers worldwide. Here, Chung talks about the gaps in caregiving science in HF globally. In the science of caregiving in HF, one primary focus of researchers is accumulating evidence about how caregivers contribute to the outcomes of patients with HF. The contribution of family caregivers is evident in improving patient HF management by supporting direct and indirect self-care activities and improving clinical outcomes, including educing readmission and mortality for patients with HF. There is a growing literature on the science of caregiving worldwide, but there are still gaps that must be addressed for improvement in research in caregiving in HF.
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.
Background. Taking care of elderly, ill and disabled people, as well as rearing children alone, involve a number of medical, psychological, economic and social problems. Objectives. The aim of this study was to assess QoL and the severity of depressive symptoms in nonprofessional caregivers compared to non-caregivers. Material and methods. The study involved 460 (100%) participants, including 335 (72.8%) women and 125 (27.2%) men. The individuals were divided into two groups of the same size: a study group of 230 (50%) caregivers and a control group of 230 (50%) non-caregivers. 35.2% (n = 81) of the caregivers were taking care of an adult family member (parent, husband, wife, sister or brother), and 64.8% (n = 149) were mothers rearing children alone, of whom 91 women (19.8% of the whole study sample) were unmarried. The instruments employed in this study were the World Health Organization Quality of Life-Bref (WHOQoL-Bref) questionnaire, the Beck Depression Inventory and a questionnaire of our own devising. Results. The caregivers (p = 0.001) had lower general QoL. the non-caregivers (control group) scored 4 points more for general QoL, which was associated with a difference in the scores for the WHOQoL-Bref physical health domain. There were statistically significant differences in general QoL (p = 0.031) and in QoL scores in the physical health domain (p = 0.043) between the subgroups of caregivers. Conclusions. Estimating the extent of non-institutional care and concern for the quality of caregivers' lives will improve the physical and mental functioning of both caregivers and those under their care. Regardless of the nature of care, state of health and family relationships, caregivers should receive support from healthcare professionals, the local community, authorities and volunteers.
Aim: The study aims to examine whether characteristics of patients with Acquired Brain Injury–ABI (time elapsed since injury, level of dependence and behavioral problems) and resilience factors of the caregiver predicted caregiver well-being (quality of life, anxiety,depression and positive aspects of caregiving). Methods: 78 voluntary family caregivers (75.6% female) of patients with ABI completed the Barthel Index, Head Behavior Injury Scale, Questionnaire of Resilience in Caregivers of Acquired Brain Injury, WHOQOL-BREF, Hospital Anxiety and Depression Scale,and Positive Aspects of Caregiving Scale. Correlation analysis and stepwise regression were carried out. Results: Time elapsed since injury showed a negative relationship with positive aspects of caregiving. On the other hand, care-recipients’ behavioral problems showed significant associations with all caregiver variables: negatively with quality of life and positive aspects of caregiving, and positively with anxiety and depression. Regarding resilience, we found a positive relationship with quality of life and positive aspects of caregiving, and a negative association with anxiety and depression, showing better predictive power with depression. Conclusions: We confirm the relevance of developing multidisciplinary caregiver intervention programmes focused on positive ways to handle care-recipients’ behavioral problems and developing positive coping skills, such as positive reinterpretation, acceptance and seeking social support, that may optimize caregiver resilience.
Background Identifying learning needs is an important component of care among patients with heart failure (HF). There is a discrepancy in the level of importance of information as perceived by patients, caregivers, and nurses. No studies have been conducted to identify learning needs among patients with HF in Jordan. Objective The aim of this study was to identify the learning needs of patients with HF in Jordan from the perspective of patients, family caregivers, and their nurses. Methods A descriptive comparative design using a convenience sample of 67 patients with HF, 67 family caregivers, and 67 nurses was used. The Heart Failure Learning Needs Inventory was used to identify the learning needs. The mean scores were compared among the 3 groups and ranked by importance for each item to determine the most important areas of perceived needs for each group. Results All groups had high total Heart Failure Learning Needs mean scores: patients, 4.12 ± 0.92; caregivers, 4.14 ± 0.65; and nurses, 4.08 ± 0.54. The top priority learning need for both patients and caregivers was "the recommended daily salt intake," whereas for nurses, it was "why I am taking each medication and its side effects"; nurses significantly perceived it as more important to learn than patients and caregivers did. Younger and employed patients requested more information than other patients. Conclusions Although some similarities exist, there are important differences among the 3 groups on perceived importance of information. Understanding these differences may be critical in developing a tailored educational program for patients and caregivers and improving nursing practice.
Objectives Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3-4 years from symptom onset. Due to the nature of the condition patients with ALS require the assistance of informal caregivers whose task is demanding and can lead to high feelings of burden. This study aims to predict caregiver burden and identify related features using machine learning techniques. Design This included demographic and socioeconomic information, quality of life, anxiety and depression questionnaires, for patients and carers, resource use of patients and clinical information. The method used for prediction was the Random forest algorithm. Setting and participants This study investigates a cohort of 90 patients and their primary caregiver at three different time-points. The patients were attending the National ALS/Motor Neuron Disease Multidisciplinary Clinic at Beaumont Hospital, Dublin. Results The caregiver's quality of life and psychological distress were the most predictive features of burden (0.92 sensitivity and 0.78 specificity). The most predictive features for Clinical Decision Support model were associated with the weekly caregiving duties of the primary caregiver as well as their age and health and also the patient's physical functioning and age of onset. However, this model had a lower sensitivity and specificity score (0.84 and 0.72, respectively). The ability of patients without gastrostomy to cut food and handle utensils was also highly predictive of burden in this study. Generally, our models are better in predicting the high-risk category, and we suggest that information related to the caregiver's quality of life and psychological distress is required. Conclusion This work demonstrates a proof of concept of an informatics solution to identifying caregivers at risk of burden that could be incorporated into future care pathways.
Background: Family caregivers of patients on haemodialysis can experience life changes and depression. Aims: This study assessed the self-perceived burden on their family caregivers of haemodialysis patients in Jordan, and the caregivers' perceived burden of caregiving and depression. The predictors of caregiver outcomes were determined. Methods: This cross-sectional study included 190 patients on haemodialysis and their caregivers in Jordan. Patients' self-perceived burden on their caregivers was assessed using the self-perceived burden scale. For caregivers, burden was assessed using the Oberst caregiving burden scale and Bakas caregiving outcomes scale - difficulty subscale. Caregivers' depression was assessed using the patient health questionnaire-9. Mean scores and standard deviations (SD) were calculated. Multiple regression analysis was done to determine the predictors of caregiver outcomes. Results: Patients thought that they were a moderate to severe burden on their caregivers (mean score 36.31, SD 3.48). Caregivers perceived themselves as moderately burdened, and thought that their lives had changed for the worse because of caregiving (mean score 2.82, SD = 0.98). Caregivers were moderately depressed (mean score 1.80, SD 0.42). Multiple regression analysis showed that the perceived difficulty of caregiving tasks and patients' self-perceived burden predicted the caregiver outcomes. The difficulty of caregiver tasks explained 38% of the overall variance in the caregiver outcomes. Patient's self-perceived burden on their caregivers explained 16.4% of the variance. Conclusion: Factors that affect the burden on caregivers of dialysis patients should be identified and interventions considered to support caregivers and reduce this burden.
BACKGROUND: Cognitive impairment is common in older patients with heart failure (HF), leading to higher 30-day readmission rates than those without cognitive impairment. OBJECTIVES: The aim of this study was to determine whether increased readmissions in older adults with cognitive impairment are related to HF severity and whether readmissions can be modified by caregiver inclusion in nursing discharge education. METHODS: This study used prospective quality improvement program of cognitive testing and inclusion of caregivers in discharge education with chart review. Two hundred thirty-two patients older than 70 years admitted with HF were screened for cognitive impairment using the Mini-Cog; if score was less than 4, nurses were asked to include caregivers in education on 2 cardiovascular units with an enhanced discharge program. Individuals with ventricular assist device, transplant, or hospice were excluded. Measurements include Mini-Cog score, 30-day readmissions, readmission risk score, ejection fraction, brain natriuretic peptide, and medical comorbidities. RESULTS: Readmission Risk Scores for HF did not correlate with Mini-Cog scores, but admission brain natriuretic peptide levels were less abnormal in those with better Mini-Cog scores. Only for patients with cognitive impairment, involving caregivers in discharge teaching given by registered and advanced practice nurses was associated with decreased 30-day readmissions from 35% to 16% (P = .01). Readmission rates without/with cognitive impairment were 14.1% and 23.8%, respectively (P = .09). Abnormal Mini-Cog screen was associated with a significantly increased risk of 30-day readmission (odds ratio, 2.23; 95% confidence interval, 1.06-4.68; P = .03), whereas nurse documentation of education with family was associated with a significantly decreased risk of 30-day readmission (odds ratio, 0.46; 95% confidence interval, 0.24-0.90; P = .02). CONCLUSIONS: Involving caregivers in discharge education significantly reduced 30-day readmission rates for patients with HF and cognitive impairment. The Readmission Risk Score was similar between patients older than 70 years with and without cognitive impairment. We have hypothesis-generating evidence that identification of cognitive impairment and targeted caregiver engagement by nurses may be critical in the reduction of readmission rates for older patients with HF.
Background: Patients with heart valve disease need to receive long-term care from their family members after surgical valve replacement. Thus, family caregivers should have adequate self-efficacy for patient care. Objectives: This study examined the effects of the family-centered empowerment model (FCEM) on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. Methods: In this quasi-experimental study, forty patients together with one of their family caregivers were consecutively recruited and allocated to an intervention or a control group. The FCEM was used in three to five sessions for patients in the intervention group. Besides, we sent their family caregivers educational cards containing the same educations provided to their patients. Finally, an educational session was held for family caregivers in which their questions were answered and each of them was provided with an educational booklet containing the same materials as the educational cards. Patients and their family members in the control group received routine care. Self-efficacy and self-esteem of family caregivers were assessed before, 1 week, and 1.5 months after the intervention. Data analysis was performed through the independent-samples t-test and the repeated measures analysis of variance. Results: Before the intervention, the mean scores of self-efficacy in the control and the intervention groups were 26.68 ± 4.79 and 26.79 ± 5.49, whereas the mean scores of self-esteem in these groups were 33.74 ± 4.55 and 33.84 ± 4.72, respectively. None of the between-group differences were significant. After the intervention, the mean scores of self-efficacy and self-esteem in the intervention group were significantly greater than the control group (37.32 ± 2.68 versus. 29.89 ± 2.20 and 36.26 ± 3.66 versus. 29.26 ± 5.84; P < 0.05). Conclusion: The use of the FCEM promotes self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve.
A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in-depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long-term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.
Purpose: To estimate informal caregiver (ICG) strain in people from a glaucoma clinic.; Methods: Patients with glaucoma were consecutively identified from a single clinic in England for a cross-sectional postal survey. The sample was deliberately enriched with a number of patients designated as having advanced glaucoma (visual field [VF] mean deviation worse than -12 dB in both eyes). Patients were asked to identify an ICG who recorded a Modified Caregiver Strain Index (MCSI), a validated 13 item instrument scored on a scale of 0-26. Previous research has indicated mean MCSI to be >10 in multiple sclerosis and Parkinson's disease. All participants gave a self-reported measure of general health (EQ5D).; Results: Responses from 105 patients (43% of those invited) were analysed; only 38 of the 105 named an ICG. Mean (95% confidence interval [CI]) MCSI was 2.4 (1.3, 3.6) and only three ICGs recorded a MCSI > 7. The percentage of patients with an ICG was much higher in patients with advanced VF loss (82%; 9/11) when compared with those with non-advanced VF loss (31%; 29/94; p = 0.001). Mean (standard deviation) MCSI was considerably inflated in the advanced patients (5.6 [4.9] vs 1.5 [2.2] for non-advanced; p = 0.040). Worsening VF and poorer self-reported general health (EQ5D) of the patient were associated with worsening MCSI.; Conclusion: ICG strain, as measured by MCSI, for patients with non-advanced glaucoma is negligible, compared with other chronic disease. ICG strain increases moderately with worsening VFs but this could be partly explained by worse general health in our sample of patients.
The purpose of this systematic review is to synthesize the study design features as well as the attributes and outcomes of technology-based health interventions targeting chronically ill adults and their family caregivers. Twenty papers representing 19 studies met the inclusion criteria. Various theoretical foundations or approaches guided the interventions in 11 studies. Interventions either aimed to support patient self-management and improve patient outcomes or enhance shared illness management and improve patient and caregiver outcomes. The interventions included educational, behavioral, and support components and were delivered using various technologies ranging from text messaging to using the Internet. Overall, patients and caregivers expressed improvements in self-management outcomes (or support) and quality of life. Interventions with a dyadic focus reported on interpersonal outcomes, with improvements noted mostly in patients. This review captures an emerging area of science, and findings should be interpreted in light of the methodological limitations of the included studies.
Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.
Purpose/objective: To examine the influence of traumatic brain injury (TBI) severity on the health-related quality of life of caregivers providing care to service members/veterans (SMV) following a TBI. Research Method/Design: Thirty caregivers (90.0% female; 70.0% spouse; age: M = 39.5 years, SD = 10.7) of SMVs who sustained a mild, moderate, severe, or penetrating TBI were recruited from Walter Reed National Military Medical Center and via community outreach to participate in one of six focus groups. Caregivers were classified into 3 TBI severity/caregiver groups: (a) moderate/severe/penetrating TBI caregiver group (n = 11); (b) mild TBI caregiver group (n = 10); and (c) equivocal TBI caregiver group (n = 9). Thematic analysis using a constant comparative approach was conducted with qualitative analysis software to identify common themes across the 3 severity/caregiver groups.; Results: Eleven themes emerged: no time for self/needs last (83.3%), poor physical health (80.0%), increased stress/anxiety (76.7%), social isolation/loneliness (66.7%), lack of access to services (50.0%), impact on family life (46.7%), sleep issues (46.7%), finances/employment (36.7%), depression (30.0%), exhaustion (30.0%), and anger (16.7%). Exploratory pairwise comparisons revealed a higher proportion of the moderate/severe/penetrating TBI group endorsed 7 of the 11 themes (no time for self/needs last, increased stress/anxiety, impact on family life, sleep issues, finances/employment, exhaustion, anger, and increased stress/anxiety) compared with the other 2 groups.; Conclusions/implications: It is important that caregivers of SMVs receive long-term support in their caregiving and parenting roles. Further work is required to understand the challenges caregivers experience in accessing services they need and how to effectively meet their needs across the care continuum.
Background: MS is a common, neurological disease and it's unpredictable, progressive disabling nature can have a devastating effect on patients, their families' and carers. It is therefore important that the MS Clinical Nurse Specialist develops appropriate skills, services and professional expertise to support individuals along the disease trajectory.; Design: An integrative literature review.; Method: A systematic search of nine databases; Cinahl, Medline, Scopus, Embase, Ovid, AMED, Academic Search Complete, Web of Science, PsycINFO up to January 31, 2018. Hand searching and review of secondary references also undertaken. Reporting using the PRISMA guidelines, quality appraised (Crowe Critical Appraisal Tool) and thematic data analysis approach (Braun and Clarke 2006).; Results: Findings from the 17 studies were extracted, synthesised and analysed thematically. Three themes emerged; the MS CNS as a longitudinal care co-ordinator, a bespoke care provider, and an expert resource. The findings suggest a strong desire for the MS CNS to be a leading health care professional to meet the needs of patient, family, and carer.; Conclusion: It can be argued that MS CNSs are best placed to meet the complex, variable needs individuals with MS, their families and carers. Further evidence is required to explore the variability of the disease and the progressive effect and impact of cognitive decline on MS patient, families' and carers' in order to meet their fluctuating and often complex needs. Findings from the review suggest a multifaceted role, and additionally, the needs of patients, families and carers are difficult to define as they vary over time as the disease progresses.
Background: Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored.; Objective: The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure.; Methods: In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem.; Results: Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011).; Conclusions: The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.
Objective: To measure the psychological distress among the informal caregivers of disabled young adults with traumatic brain injuries (TBI) and to identify its associated factors.; Methods: An analytical cross sectional study was conducted with 76 informal caregivers of young adults (19 - 50 years) with TBI, using admission records of one of the tertiary care hospitals in Karachi, Pakistan from 2015 to 2016. Data were collected using a structured questionnaire comprising a general demographic questionnaire and the General Health Questionnaire- 28. The effect of the predictors on the psychological distress was determined by applying multiple linear regression analysis.; Results: The mean score of the psychological distress was found to be 23.5±14.28. The findings indicated that anxiety and insomnia, and social dysfunction were the most affected domains of psychological distress; whereas, depression was the least affected. Factors including the management of finances, number of children, patient's gender, and patient's level of disability and lack of socialization were positively associated with the level of distress. As reported by participants, religious beliefs served as a coping mechanism for most of them.; Conclusions: The study showed a high level of distress among informal caregivers of young adults with TBI. For recognizing the psychological effects of TBI in patients and their informal caregivers, it is important to initiate and ensure the provision of psychological support to the patients and their families.
Heart failure is a serious and complex chronic illness and family caregivers often assist these individuals in performing self-care. Unsurprisingly, caregivers often are overwhelmed by daily activities associated with heart failure management and frequently have depressive symptoms. This study examined predictors (i.e., sociodemographic and clinical characteristics, social support, social problem-solving, family functioning, and objective and subjective burden) of depressive symptoms in 530 informal caregivers of individuals with heart failure in a large cross-sectional, descriptive study in the community. Younger caregivers who provided care for longer periods of time, lived in rural areas, and had less social support and lower problem-solving skills were more likely to have depressive symptoms. These findings emphasize the need for further studies to develop dynamic and innovative approaches that incorporate multiple components to lessen caregiving challenges. Social support and problem-solving skills training may be useful components to lessen depressive symptoms in these younger, rural caregivers.
Objective: To evaluate a Multiple Family Group (MFG) education and support intervention for individuals with Spinal Cord Injury (SCI) and their primary caregivers. We hypothesized that MFG would be superior to an Education Control Group (EC) for improving patient activation and coping skills, social supports, and relationship functioning. Setting: A large free-standing inpatient and outpatient rehabilitation facility. Participants: Community dwelling adults with SCI and their caregivers living in the Northwest United States. Interventions/Methods: Nineteen individuals with SCI who had been discharged from inpatient rehabilitation within the previous three years, and their primary caregivers participated. Patient/caregiver pairs were randomized to the MFG intervention or an active SCI EC condition in a two-armed clinical trial design. Participants were assessed pre- and post-program and 6 months post-program. Qualitative and quantitative outcomes were evaluated. Focus groups were conducted with each group to determine benefits and recommendations for improvement. Results: Relative to EC, MFG reduced passive coping and increased subjective and overall social support in participants with SCI. Relative to EC, MFG also reduced passive coping in caregivers. Patient activation relative to EC was non-significantly increased. Content analysis identified four themes describing participants' experiences: enhanced sense of belonging, increased opportunities for engagement, knowledge, and team work; results that were generally congruent with quantitative measures of improved social support. Conclusions: Relative to EC, MFG assisted participants with SCI and their caregivers to manage the difficult, long-term, life adjustments by improving coping and strengthening social support.Trial registration: ClinicalTrials.gov NCT02161913. Registered 10 June 2014.
Purpose: To explore changes in the quality of life of caregivers of amputees due to type 2 diabetes ten months after amputation.; Methods: This is a longitudinal study with three moments of evaluation (T1: one month after surgery, T2: 7 months, T3: 10 months). The sample comprised 110, 101, and 84 caregivers of amputated patients with type 2 diabetes. Caregivers answered a Socio-demographic questionnaire; the Self-Assessment Caregiver; the Family Disruption from Illness Scale; and the Short Form Health Survey (SF36).; Results: Stress levels were not significantly reflected in changes on mental quality of life over time, except in the caregivers who presented less stress, emphasizing the adverse role of stress when experienced on a continuous basis for ten months on the caregivers' mental well-being. Caregivers presented greater number of physical symptoms at T2 that decreased at T3.; Conclusions: According to the results, in order to promote caregivers' physical and mental quality of life, it would be important to evaluate stress levels especially in patients who presented somatic complaints.
Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.
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.
Background: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience. Methods: Qualitative research looking at patient- and family-centred care (PFCC) on two care pathways (stroke and hip fracture) was conducted in England and Wales. A realist approach combined with participatory action research was used to account for the complexity of organisational context and power relations. Multiple methods were used, including documentary analysis, participatory steering groups with staff and patient representatives, observations of the care pathways (n = 7), staff and patient and relative focus groups (n = 8), and hospital staff, patient and PFCC staff interviews (n = 47). Results: Findings highlight multiple factors that support and hinder good patient experiences. Within individual care, paternalistic values and a lack of shared decision-making and patient-centred care still exist. Supportive interdisciplinary teamwork is needed to address issues of hierarchy, power and authority amongst staff and managers. At the organisational level, key issues of waiting times, patient flow, organisational resources and timely discharge affect staff's time and capacity to deliver care. In addition, macro contextual factors, such as finance, policy, targets and measures, set particular limits for improvement projects. Conclusions: Given this context, improving patient experience needs to go well beyond small-scale projects at the micro and meso level to incorporate a more critical understanding of systems, the wider organisational context and how power operates at multiple levels to enable and constrain action. In order to more meaningfully understand and address the factors that can help or hinder activities to improve patient experiences, PFCC frameworks and methods need to account for how power inequities operate and require the adoption of more participatory co-produced and empowering approaches to involve patients, relatives, carers and staff in improving complex healthcare environments.
Study Design: Mixed-methods study.; Objective: Evaluate the knowledge that family caregivers of individuals with spinal cord injuries acquired through the use of a high-fidelity simulation-based learning (SBL) program.; Setting: The study was comprised of three phases: a previous qualitative research study detecting training needs, one in which clinical simulation scenarios were designed, and a final quasi-experimental phase in which ten caregivers of individuals with spinal cord injuries were trained in their care using simulations at the Toledo National Hospital for Paraplegics (Spain).; Methods: The competences acquired by the family were evaluated before and after the simulation training. A researcher-validated tool for each scenario was utilized for this evaluation.; Results: Four learning scenarios were designed based on the needs identified through the caregiver interviews. Following the training of the caregivers with SBL, an increase in their knowledge and skills was identified. For all the scenarios, the caregivers obtained a higher average score on the post test than on the pre test, and these differences were significant (p < 0.001).; Conclusions: Simulation training is a useful and efficient learning tool for caregivers of individuals with a spinal cord injury.
Background/objective: Anxiety is common in patients experiencing neurocritical illness and their family caregivers. Resilience factors like mindfulness and coping skills may be protective against symptoms of emotional distress, including anxiety. Less is known about the interplay of anxiety symptoms and resilience factors between patients and caregivers. The purpose of this study is to examine the trajectory of anxiety symptoms among dyads of neurocritical care patients without major cognitive impairment and their family caregivers and to elucidate the relationship between resiliency (e.g., mindfulness and coping) and anxiety in these dyads.; Methods: Prospective, longitudinal study of adults admitted to the neurological intensive care unit (Neuro-ICU) and their caregivers. Dyads of patients (N = 102) and family caregivers (N = 103) completed self-report measures of mindfulness (Cognitive Affective Mindfulness Scale-Revised) and coping (Measure of Current Status-Part A) during Neuro-ICU hospitalization and anxiety symptoms (anxiety subscale of the Hospital Anxiety and Depression Scale) during hospitalization and at 3- and 6-month follow-up. We used actor-partner interdependence modeling to predict the effect of one's own baseline characteristics on one's own and one's partner's future anxiety symptoms.; Results: Rates of clinically significant anxiety symptoms were 40% for patients and 42% for caregivers at baseline. Of these, 20% of patients and 23% of caregivers showed moderate and severe symptoms. Approximately, one-third of patients and caregivers reported clinically significant anxiety symptoms at 3- and 6-month follow-ups, with more than 20% endorsing moderate or severe symptoms. Patients' own baseline mindfulness, coping, and anxiety symptoms were associated with lower anxiety symptoms at all time points (ps < 0.001)-this was also true for caregivers. For both patients and caregivers, one's own baseline mindfulness predicted their partner's anxiety symptoms 3 months later (p = 0.008), but not at 6-month follow-up.; Conclusions: Anxiety symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months following admission. Mindfulness is interdependent and protective against anxiety in dyads at 3-month but not 6-month follow-up. Early, dyad-based interventions may prevent the development of chronic anxiety in patients without major cognitive impairment and caregivers.
Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.
Purpose: End-stage renal disease (ESRD) patients on hemodialysis (HD) and their family caregivers (FCGs) reported poor quality of life (QoL). Hope has shown association with QoL at the individual level. However, the association between hope and QoL in dyads has never been examined in particular in dyads of patients and FCGs. The purpose of this study was to examine the associations between hope and QoL in dyads of ESRD patients on HD and their family caregivers (FCGs). Methods: This was a cross-sectional study in which data were collected from 123 community-dwelling patient-FCG dyads. Hope was measured using the Herth Hope Index and QoL was measured using the World Health Organization Quality of Life BREF. The Actor-Partner Interdependence Model multilevel modeling dyadic analysis approach was used to analyze the data. Results: Each individual's hope scores predicted their own better QoL scores. Patients' hope scores predicted better Environmental domain QoL in FCGs. Conclusion: All domains of QoL of patients and their FCGs are related to their own level of hope. Better FCGs' environment domain of QoL was linked to high patients' levels of hope. Improving QoL may be achieved by targeting and improving hope in both members of the dyad.
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.
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.
Background: With the obtained advancement in solving health problems, family caregivers are replaced with the care institutions. The accompanying and supporting patients during the disease treatment is very effective in the Iranian culture.; Aim: This study aims at determining the effect of health intervention based on family-centred empowerment model on health literacy and self-efficacy among caregivers of patients with multiple sclerosis.; Methods: In this quasi-experimental study, 70 family caregivers were randomly assigned to the two control and experimental groups, who were evaluated using demographic TOFHLA health literacy and self-efficacy questionnaires. Then, based on training needs in the experimental group, intervention was conducted based on the family-centred empowerment model during one month. The control group received no intervention, and immediately after training and three months after implementing the program, the health literacy and self-efficacy in both the experimental and control groups were re-evaluated.; Results: Before intervention, mean of health literacy in the experimental group was 57.2 ± 9.15 and 3 months after intervention, it reached 62.45 ± 9.39, (p < 0.001). The self-efficacy score in the experimental group was 17.2 ± 3.48 before intervention and it reached to 19.34 ± 11.3 after intervention, which was also significant(p < 0.001).; Conclusion: interventions based on family-centred empowerment approach can improve the health literacy and self-efficacy of caregivers, assist them to provide specialised and efficient care and lead to improved quality of care in caregiving.
Cirrhosis leads to considerable morbidity and mortality, compromises quality of life, and often necessitates assistance in activities of daily living. An informal caregiver bears the psychological burden of coping with the needs of the patient and the knowledge of morbid prognosis of a loved one. This aspect is rarely recognized and almost never addressed in a clinical practice. This cross-sectional study assessed the factors influencing psychological burden of cirrhosis on the caregivers in a predominantly lower-middle socioeconomic class Indian population. Patients underwent psychometric tests [Psychometric Hepatic Encephalopathy Score (PHES)], and questionnaires for quantifying caregiver burden [Perceived Caregiver Burden (PCB) and Zarit Burden Interview (ZBI)] and assessing depression [Beck Depression Inventory (BDI)] and anxiety [Beck Anxiety Inventory (BAI)] were administered. One hundred patients with cirrhosis [70% male, 27% with past hepatic encephalopathy (HE), and 53% with minimal HE] and their caregivers (66% women, 81% spouse, 26.51 years of mean relationship) were evaluated. Caregiver burden scores were higher in patients with previous overt HE than in those without previous overt HE [PCB (74.63 vs. 66.15, P = 0.001), ZBI (27.93 vs. 21.11, P = 0.023), BDI (11.63 vs. 8.96, P = 0.082), and BAI (11.37 vs. 8.12, P = 0.027)]. Similarly, caregivers of patients with minimal HE had higher caregiver burden that those of patients who did not have minimal HE [PCB (70.74 vs. 65.85, P = 0.027), ZBI (26 vs. 19.51, P = 0.015)]. Burden scores correlated well with each other and with liver disease severity scores and negatively correlated with socioeconomic status. Repeated hospital admissions, alcohol as etiology, and lower socioeconomic status were the independent predictors of caregiver burden. Higher perceived burden is common in caregivers of patients with cirrhosis. Repeated hospital admissions, alcoholism, and lower socioeconomic status influence caregiver burden.
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.
Background: Caregivers of hemodialysis patients spend a large amount of time providing care to these patients while tolerating fatigue and stress. This study evaluated a family-centered empowerment program on the care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory.; Methods: In this randomized clinical trial, 70 family caregivers of hemodialysis patients in Isfahan, Iran, were selected and randomly allocated to intervention and control groups, in 2015-2016. Two questionnaires were used to collect the family caregivers' characteristics, care burden, and self-efficacy, and patients' negative and positive outcomes expectancies. Data were analyzed using SPSS before, immediately after, and 2 months after the intervention.; Results: There was no significant difference in the mean scores of care burden, positive outcomes expectancies, negative outcomes expectancies, and self-efficacy between the two groups before the intervention. However, there were significant differences in the post-test and follow-up data analyses (P<0.05).; Conclusion: Given the degenerative nature of chronic kidney disease, it can be considered as a source of long-term and chronic stress for caregivers. Therefore, by implementing an empowerment program, caregiving behaviors can be improved, positive outcomes expectancies can be increased, and negative outcomes expectancies can be reduced.
Purpose: 1) To compare levels of emotional symptoms and health-related quality of life between patients with heart failure and their family caregivers; and 2) to examine whether patients' and caregivers' emotional symptoms were associated with their own, as well as their partner's health-related quality of life. Method: In this cross-sectional study, 41 patients-caregiver dyads (78% male patients, aged 68.6 years; and 83% female caregivers, aged 65.8 years) completed all nine dimensions of the Brief Symptom Inventory and the Minnesota Living with Heart failure Questionnaire. Dyadic data were analysed for 6 sub-scales of the Brief Symptom Inventory, using the Actor–Partner Interdependence Model. Results: There were no statistically significant differences in emotional symptoms and health-related quality of life between patients with heart failure and their caregivers. Patients' and caregivers' emotional symptoms were associated with their own health-related quality of life. Caregivers' anxiety, phobic anxiety, obsession-compulsion, depression and hostility negatively influenced their partner's (i.e. the patient's) health-related quality of life. There were no partner effects of patients' emotional symptoms on the health-related quality of life of caregivers. Conclusions: The results of this study suggest that patients may be particularly vulnerable to the emotional distress, i.e. thoughts, impulses and actions of their caregivers. It may be possible to improve patients' health-related quality of life by targeting specific detrimental emotional symptoms of caregivers.
Objective: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect.; Setting: Community.; Participants: One hundred sixty-five caregivers of service members/veterans with TBI.; Design: Retrospective database analysis.; Main Measures: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience).; Results: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect.; Conclusions: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.
Patients with chronic illness often require ongoing support postdischarge. This study evaluated a simple-to-use, mobile health-based program designed to improve postdischarge follow-up via (1) tailored communication to patients using automated calls, (2) structured feedback to informal caregivers, and (3) automated alerts to clinicians about urgent problems. A total of 283 patients with common medical diagnoses, including chronic obstructive pulmonary disease, coronary artery disease, pneumonia, and diabetes, were recruited from a university hospital, a community hospital, and a US Department of Veterans Affairs hospital. All patients identified an informal caregiver or "care partner" (CP) to participate in their postdischarge support. Patient-CP dyads were randomized to the intervention or usual care. Intervention patients received weekly automated assessment and behavior change calls. CPs received structured e-mail feedback. Outpatient clinicians received fax alerts about serious problems. Primary outcomes were 30-day readmission rate and the combined outcome of readmission/emergency department (ED) use. Information about postdischarge outpatient visits, rehospitalizations, and ED encounters was obtained from medical records. Overall, 11.4% of intervention patients and 17.9% of controls were rehospitalized within 30 days postdischarge (hazard ratio [HR]: 0.59; 95% confidence interval [CI]: 0.31–1.11; p = 0.102). Compared to intervention patients with other illnesses, those with pulmonary diagnoses generated the most clinical alerts (p = 0.004). Pulmonary patients in the intervention group showed significantly reduced 30-day risk of rehospitalization relative to controls (HR: 0.31; 95% CI: 0.11–0.87; p = 0.026). The CP intervention did not improve 30-day readmission rates overall, although post hoc analyses suggested that it may be promising among patients with pulmonary diagnoses.
The aim of this study was to understand the experiences of family caregivers in the process of diagnosing hereditary angioedema. An interpretive and qualitative research methodology based on Gadamer's philosophical hermeneutics was carried out. Data collection took place between May 2015 and August 2016 and included a focus group and in-depth interviews with 16 family caregivers. Two themes define the experiences of family caregivers: "Family life focuses on identifying the problem" and "Discovering and coping with a complex diagnosis." The process of diagnosis generates fear, anxiety, uncertainty, and incomprehension. Family caregivers are the main support for patients diagnosed with hereditary angioedema. As they share in the patients' suffering, they need a diagnosis to be established to be able to cope with the disease and offer support. Family health nurses can contribute to improving the coping process in this phase of the disease.
Purpose/objective: This commentary demonstrates the need for culturally adapted interventions to support informal caregivers (care partners) of adults with traumatic brain injuries (TBI), proposes and supports an evidence-based intervention, Problem-Solving Training (PST), uniquely suitable for cultural adaptation for Latinx care partners, and describes several considerations and concrete suggestions for initial cultural adaption of PST for Latinx care partners of adults with TBI.; Results: Caregiving among Latinxs is rooted in cultural values and norms that may facilitate or challenge family coping and adaptation after TBI in the United States. Evidence-based interventions to address emotional distress, health, and caregiver burden are needed for Latinx care partners, but must first be translated and adapted to address language and cultural values. Compared with other cognitive and behavioral evidence-based interventions, PST is ideal for cultural adaptation, as the problem-solving process is driven by, and therefore sensitive and responsive to, care partners and their individual values and situations.; Conclusions/implications: Adapting evidence-based problem-solving interventions like PST ("Descubriendo Soluciones Juntos") to be culturally tailored and culturally sensitive for Spanish-speaking Latinx care partners of adults with TBI could reduce existing health disparities and improve the health, well-being, and quality of life of these care partners.
Background: Patients with heart failure (HF) and their family caregivers usually consume similar diets, but there is a lack of evidence about diet quality of patients with HF and their family caregivers.; Objective: The specific aim of this study was to compare diet quality of patients with HF with that of their family caregivers.; Methods: In this cross-sectional study, 40 patients with HF and their 40 family caregivers completed a VioScreen Food Frequency Questionnaire from which Healthy Eating Index-2010 (HEI) diet quality scores (consisting of the total HEI score and 12 component scores) were calculated.; Results: None of the 40 patient-caregiver dyads had a high diet quality score (ie, total HEI > 80), whereas 21% of participants had poor diet scores (ie, total HEI ≤ 50). There were no differences in total HEI scores (58.5 vs 59.4, P = .58) or the 12 component scores of the HEI within dyad members. Mean scores of 6 of the 12 components (ie, total fruit, greens and beans, total protein foods, seafood and plant proteins, fatty acids, empty calories) for both members of the HF dyad were lower than the national average. Interestingly, scores for the sodium component were similarly low in patients and caregivers (4.1 vs 3.4, P = .24), indicating high sodium intake.; Conclusion: Both patients and caregivers consume poor-quality diets that are high in sodium. These findings suggest that nutrition interventions to improve diet quality for patients with HF need to be targeted at the family as a unit.
Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.
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.
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.
Background: Internet-based interventions can help empower caregivers of people with chronic diseases and can develop solutions to decrease the physical and psychological consequences resulting from caregiving. Objective: Analysing the effectiveness of health web-based and/or mobile app-based interventions with regard to the level of well-being and quality of life of informal caregivers in charge of people with chronic diseases. Materials and methods: Systematic review of the following databases: Pubmed, Apa PsycINFO, ProQuest Health & Medical Complete and Scopus. Quality standards established by PRISMA and Joanna Briggs Institute Systematic Review Approach have been followed. The two phases of the selection process were carried out independently and a cross-case comparative analysis by three reviewers. Results: A total of 17 studies met inclusion criteria. The analysis shows that almost all studies involved web-based interventions with the exception of one which concerned a mobile app-based intervention. Most of them prove their effectiveness in the overall well-being of the caregiver and more specifically in the mental dimension, highlighting a decrease in caregivers’ anxiety and/or distress, depression symptoms and sense of competence. Conclusions: The findings support that web-based interventions have an impact mainly on caregivers’ well-being. Nevertheless, other dimensions that are necessary for caregiving, such as physical, mental and social dimension, have been scarcely explored. More studies on mobile app-based interventions are needed to know their effectiveness.
Persons in a situation of dependency, or independent but with deficiencies in their autonomy, have specific needs for a better management of their long-term care. New sensing technologies based on real-time location systems, mobile apps, the Internet-of-Things (IoT) paradigm and cloud systems can be used to collect and process information about their activity and their environment in a continuous and truthful way. In this chapter, we analyse current solutions available to support informal caregivers and propose an innovative framework based on the integration of existing IoT products and services of cloud architectures. From the technological point of view, the system we propose is focused on the integration and combination of technologies for providing support for the informal caregiver in long-term care. The differential factor of these technologies is the customization level according to the specific context of the end-users. The main contribution of the proposed systems relies on the intelligence and the management of recorded events to create complex and reliable alerts, and its ability to configure multiple end-user instances and configurations (e.g.: needs, countries, regions, cultures). These type of systems should be sustainable and efficient, and that is why the inclusion of cloud technologies can grant its flexibility and scalability.
In the UK, about 3 million people live with Chronic Obstructive Pulmonary Disease (COPD). Informal carers such as family and friends play a vital role in promoting well-being among older adults suffering from COPD. However, difficulties experienced by caregivers are increasing and affecting their quality of life. New technologies and innovations such as m-health have the potential in reducing the burden of these carers. In this paper, we propose an informal carer hub (ICH), which is part of the WELCOME EU project to help informal carers better manage COPD patients in two European countries: the UK and the Netherlands. The acceptability of the system has been tested by making use of a modified version of the technology acceptance model (TAM 3). The aim of this study was to ensure that the proposed informal carer application is easy to learn, effective to use and acceptable from the informal carers’ perspectives.
Study Design: Cross-sectional survey.; Objective: The objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland.; Setting: Community setting, nationwide in Switzerland.; Methods: Questionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care.; Results: In total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care.; Conclusions: Adequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.
Objectives: Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.; Design: An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.; Intervention: TiM telehealth plus usual care versus usual care.; Setting: A specialist MND care centre in the UK.; Participants: Patients with MND and their primary informal carers.; Primary and Secondary Outcome Measures: Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.; Results: Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.; Conclusion: A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.; Trial Registration Number: ISRCTN26675465.
Objective: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.; Method: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.; Results: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).; Conclusions: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.
Background: Students living with a chronically ill family member may experience significant pressure, stress, and depression due to their caregiving situation. This may also lead to them delaying or dropping out of school when the combination of being a caregiver and their education program are too demanding. This survey study aims to explore the consequences for students of bachelor or vocational education programs when they are growing up with a chronically ill family member and the influence of various background characteristics and risk factors.; Methods: A survey was sent to 5997 students (aged 16-25 years) enrolled in bachelor or vocational education programs in the north of the Netherlands. The content of the survey was based on a literature study and consultation with experts. Descriptive statistics, Chi-square tests, and logistic regression analyses were performed.; Results: A total of 1237 students (21%) responded to the survey. A sub group of 237 (19%) students (mean age 21(2.2); 87% female) identified themselves as growing up with a chronically ill family member. More than half (54.9%) of these students indicated that they experienced negative consequences in daily life. A significant association (OR .42, p < .02) was found for these consequences and the level of education for which attending vocational education yields a higher risk. In addition, growing up with a mentally ill family member was associated with a 2.74 (p = .04) greater risk of experiencing negative consequences in daily life compared to students living with a family member with a physical disorder or multiple disorders.; Conclusion: Since a substantial number of students growing up with a chronically ill family member indicate serious physical, mental, and social consequences as a result of this care situation, awareness for this specific age-group is needed. Students with a mentally ill family member and students undertaking vocational education appear to be especially at risk. Further research is required in order to gain insight that is more in-depth into the exact type of problems that these students encounter and the specific needs that they have regarding support.
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.
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.
Familial caregivers are often directly involved in treatment of patients with chronic wounds, however, less is known about their personal impairment, and specific support is lacking for these important members of the therapeutic team regarding wound care. The aim of this study was to investigate the influence of wound care provided by family members on their quality of life, and to create a suitable questionnaire to describe the affected personal aspects. A five-part questionnaire, named ELWA, was created by the authors and answered by 30 familial caregivers of 30 respective patients with chronic leg ulcers. One third of the caregivers reported receiving no medical advice about detailed wound care at all. A lack of information regarding details of the disease correlated with personal strain. Additional costs, anxiety, frustration, and reduced spare-time activities were among the top-rated factors affecting quality of life of family members. The results from this newly created questionnaire point out the needs for familial caregivers of patients with chronic wounds and may help to establish individual support. Implementation of clinical treatment strategies is planned through multicentre application.
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.
Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure; however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross-sectional study. Ninety-five participants were recruited at a hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness) and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcome Study Social-Support Survey, and caregivers compiled the Family Strain Questionnaire Short-Form. Results: Caregivers reported important levels of strain and strongly related to a worsening of their own and patients' symptoms. Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients' and caregivers' symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety, and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention, and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk.
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.
Background: End‐stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. Objective: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. Design: Qualitative study design using semi‐structured interviews. Setting and participants: Twenty‐three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. Results: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision‐making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. Discussion and conclusion: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision‐making factors as well as the relational dynamics between patients, caregivers and doctors.
Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered.
Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.
Objectives: To evaluate how eight major medical comorbidities of dementia (arthritis, cancer, diabetes, heart disease, hypertension, lung disease, osteoporosis, and stroke) are associated with caregivers' perceptions of emotional caregiving difficulties and caregiving gains (ie, benefits or rewards from the care role).; Design: Nationally representative cross-sectional surveys of community-dwelling persons living with dementia (PLWDs) and their co-resident family caregivers in the United States.; Setting: The 2011 National Health and Aging Trends Study and National Study of Caregiving.; Participants: Total of 356 co-resident family caregivers of community-dwelling PLWDs.; Measurements: Caregivers' sociodemographic and health characteristics, caregiving stressors, emotional caregiving difficulties, caregiving gains, and chronic health conditions of PLWDs.; Results: Caregivers most commonly cared for a PLWD with arthritis (65.5%), followed by hypertension (64.9%), diabetes (30.1%), stroke (28.8%), osteoporosis (27.1%), heart disease (23.3%), cancer (21.5%), and lung disease (17.2%). Logistic regressions revealed that caregivers were 2.63 and 2.32 times more likely to report higher than median emotional caregiving difficulties when PLWDs had diagnoses of diabetes and osteoporosis, respectively, controlling for caregiver sex, relationship to the PLWD (spouse vs non-spouse), educational attainment, self-rated health, and assistance with activities of daily living and medical care activities. Caregivers were also 2.10 times more likely to report lower than median caregiving gains when PLWDs had a diagnosis of osteoporosis.; Conclusion: Comorbid health conditions among PLWDs have distinct implications for caregiving outcomes. Clinical care and interventions to improve the well-being of both care dyad members should support caregivers in managing medical comorbidities of dementia.
Successful management of diabetic foot ulceration (DFU) is crucial for preventing long-term morbidity and lowering risk of amputations. This can be achieved with a multifaceted approach involving a multidisciplinary team, with the patient at the centre. However, not all healthcare setups enable this, and the rate of lower limb amputations continues to rise. It is therefore time to consider new approaches to diabetic foot care, capitalising on engagement from patients in self-management while supported by their informal caregivers (ICGs) to help improve outcome. The role of ICGs in DFU care has the potential to make a significant difference in outcome, yet this resource remains, in most cases, underutilised. Limited research has been conducted in this area to reveal the true impact on patient outcomes and the caregivers themselves. This narrative review aims to explore how ICGs can benefit DFU management with applicability to different healthcare setups while benefiting from established experience in the care of other chronic health conditions.
Technology systems to alleviate the burden of caregiving are increasing in use. The home is a unique place where chronic disease management is often performed by informal caregivers, yet how caregivers make decisions about adopting a specific technology has not been thoroughly explored. This systematic scoping review mapped evidence on decision-making factors associated with technology adoption and use by caregivers of patients receiving care at home. We followed the recommendations developed by members of the Joanna Briggs Institute. Four electronic databases (PubMed, Medline, CINAHL, and Embase) were searched using both medical subject headings (MeSH terms) and key words. A total of six papers were included for data synthesis. Factors such as information, comprehension, motivation, time, perceived burden, and perceived caregiving competency were found to affect adoption of technology. There are other factors uniquely springing from the patient and technology, as well as shared issues between caregivers and patient, and caregivers and technology. Although some factors depend on technology type and patient diagnosis, there were some common factors across the research. Those factors can be carefully considered in referring technology use for caregivers. More focused study in this underinvestigated area is much needed.
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.
Objective: To evaluate the effectiveness of Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES), a skills training program for caregivers of persons with functional or cognitive impairments. Design: A two-arm RCT. Setting: Single Veterans Affairs Medical Center. Participants: Patients and their primary caregivers referred in the past 6 months to home and community-based services or geriatrics clinic. Intervention: All caregivers received usual care. Caregivers in HI-FIVES also received five training calls and four group training sessions. Main Measures: Cumulative patient days at home 12 months post-randomization, defined as days not in an emergency department, inpatient hospital, or post-acute facility. Secondary outcomes included patients' total VA health care costs, caregiver and patient rating of the patient's experience of VA health care, and caregiver depressive symptoms. Results: Of 241 dyads, caregivers' (patients') mean age was 61 (73) years, 54% (53%) Black and 89% (4%) female. HI-FIVES was associated with a not statistically significant 9% increase in the rate of days at home (95% CI 0.72, 1.65; mean difference 1 day over 12 months). No significant differences were observed in health care costs or caregiver depressive symptoms. Model-estimated mean baseline patient experience of VA care (scale of 0-10) was 8.43 (95% CI 8.16, 8.70); the modeled mean difference between HI-FIVES and controls at 3 months was 0.29 (p = .27), 0.31 (p = 0.26) at 6 months, and 0.48 (p = 0.03) at 12 months. For caregivers, it was 8.34 (95% CI 8.10, 8.57); the modeled mean difference at 3 months was 0.28 (p = .18), 0.53 (p < .01) at 6 months, and 0.46 (p = 0.054) at 12 months. Conclusions: HI-FIVES did not increase patients' days at home; it showed sustained improvements in caregivers' and patients' experience of VA care at clinically significant levels, nearly 0.5 points. The training holds promise in increasing an important metric of care quality-reported experience with care.
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.
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).
Background: Parkinson's is an incurable, neuro-degenerative condition with multiple symptoms substantially impacting on living conditions and quality of life (QoL) for people with Parkinson's (PwP), most whom are older adults, and their families. The study aimed to undertake a literature review of studies conducted in the UK that quantify the direct or indirect impact of Parkinson's on people with the condition, their families, and society in terms of out-of-pocket payments and financial consequences.; Methods: Literature was searched for Parkinson's-related terms plus condition impact (eg, financial, employment, pension, housing, health care costs, and QoL) in the UK setting. The strategy probed several electronic databases with all retrieved papers screened for relevancy. The instruments used to measure patient-related outcomes were then examined for their relevancy in justifying the results.; Results: The initial search retrieved 2,143 papers of which 79 were shortlisted through title and abstract screening. A full-text reading indicated 38 papers met the inclusion and quality criteria. Summary data extracted from the articles on focus, design, sample size, and questionnaires/instruments used were presented in four themes: (a) QoL and wellbeing of PwP, (b) QoL and wellbeing of caregivers and family members, (c) employment and living conditions, and (d) direct and indirect health care and societal cost.; Conclusion: UK results substantiated global evidence regarding the deterioration of QoL of PwP as the condition progressed, utilizing numerous measures to demonstrate change. Many spouses and family accept care responsibilities, affecting their QoL and finances too. The review highlighted increased health care and privately borne costs with condition progression, although UK evidence was limited on societal costs of Parkinson's in terms of loss of employment, reduced work hours, premature retirement of PwP and caregivers that directly affected their household budget.
Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life.; Objective: To evaluate whether a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers can improve outcomes.; Design, Setting, and Participants: Single-site randomized clinical trial conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016.; Interventions: The intervention (n = 120) involved a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by nurses with special training on supporting patients with COPD using standardized tools. Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care.; Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful).; Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; 61.7% women), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 62.3 (18.8) in the intervention group and 63.6 (17.4) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 1.40 (95% CI, 1.01-1.79) in the intervention group vs 0.72 (95% CI, 0.45-0.97) in the usual care group (difference, 0.68 [95% CI, 0.22-1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was 2.81 in the intervention group and -2.69 in the usual care group (adjusted difference, 5.18 [95% CI, -2.15 to 12.51]; P = .11). During the study period, there were 15 deaths (intervention: 8; usual care: 7) and 339 hospitalizations (intervention: 202; usual care: 137).; Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly greater COPD-related hospitalizations and emergency department visits, without improvement in quality of life. Further research is needed to determine reasons for this unanticipated finding.; Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.;
Background: The aim of this study was to estimate the mean cost per caregiver of informal care during the first year after myocardial infarction event in France.; Methods: We used the Handicap-Santé French survey carried out in 2008 to obtain data about MI survivors and their caregivers. After obtaining the total number of informal care hours provided by caregiver during the first year after MI event, we estimated the value of informal care using the proxy good method and the contingent valuation method.; Results: For MI people receiving informal care, an annual mean cost was estimated at €12,404 (SD = 13,012) with the proxy good method and €12,798 (SD = 13,425) with the contingent valuation method per caregiver during the first year after myocardial infarction event.; Conclusions: The present study suggests that informal care should be included more widely in economic evaluations in order not to underestimate the cost of diseases which induce disability.
Purpose: To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis (MS) who have moderate-to-severe disability and the family caregivers providing assistance to such individuals. Methods: Seventy-eight people with MS and 46 family caregivers participated in this cross-sectional survey study, guided by the Concerns Report Methodology. Results: The results show differences between groups in rankings for some need items. However, three need items were prioritized by both people with MS and the family caregivers: (1) information about available resources to support physical activity participation, with Need Indexes of 76.6% and 52.3%, respectively; (2) programs that support joint participation of people with MS together with their caregivers in physical activity, with Need Indexes of 62.0% and 68.9%, respectively; and (3) programs that have affordable total cost of participation, with Need Indexes of 50.7% and 52.3%, respectively. A broad range of factors (i.e., education, living situation, type of community, marital status, employment, and income, as well as comorbidity status) was significantly associated with one or more of these need items. Several modifiable impairment-related, personal and logistical factors were identified by both groups as barriers to co-participation in physical activity. Conclusions: The findings highlight the complexity of developing community resources that target physical activity promotion in MS dyads. Importantly, our findings suggest that resources designed to influence dyadic physical activity participation need to include content that are responsive and tailored to both the needs of the person with MS and the unique needs of the family caregiver. The results also underscore the importance of reinforcing physical activity as a shared behavior and providing information about affordable options for exercising together to the benefit of each individual and the dyad (i.e., partnership). Overall, our findings provide a possible starting point to guide the identification of potential participants that might benefit the most from future intervention development work. MS has life-altering consequences for people with the disease and the family caregivers who support such individuals. Rehabilitation professionals need to reinforce physical activity as a shared behavior and provide information about affordable options for exercising together to the benefit of each individual and the dyad. A "one-size-fits-all" approach is not appropriate, therefore, clinicians need to identify flexible and pragmatic strategies to increase dyadic participation in the presence of unique caregiver and care-recipients barriers that might impede such an increase.
Background: There is increasing interest in assessing the effects of interventions on older people, people with long-term conditions and their informal carers for use in economic evaluation. The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) is a measure that specifically assesses the impact of social care services on informal carers. To date, the ASCOT-Carer has not been preference-weighted. Objectives: To estimate preference-based index values for the English version of the ASCOT-Carer from the general population in England. Methods: The ASCOT-Carer consists of 7 domains, each reflecting aspects of social care-related quality of life in informal carers. Preferences for the ASCOT-Carer social care-related quality of life states were estimated using a best-worst scaling exercise in an online survey. The survey was administered to a sample of the general adult population in England (n = 1000). Participants were asked to put themselves into the hypothetical state of being an informal carer and indicate which attribute they thought was the best (first and second) and worst (first and second) from a profile list of 7 attributes reflecting the 7 domains, each ranging at a different level (1-4). Multinomial logit regression was used to analyze the data and estimate preference weights for the ASCOT-Carer measure. Results: The most valued aspect by English participants was the 'occupation' attribute at its highest level. Results further showed participants rated having no control over their daily life as the lowest attribute-level of all those presented. The position of the 7 attributes influenced participants' best and worst choices, and there was evidence of both scale and taste heterogeneity on preferences. Conclusion: This study has established a set of preference-based index values for the ASCOT-Carer in England derived from the best-worst scaling exercise that can be used for economic evaluation of interventions on older individuals and their informal carers.
Objective: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.; Design: Global patient and caregiver survey.; Study Populations: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.; Measurements: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively. Hypoparathyroidism-associated symptoms were assessed by a disease-specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI).; Results: Data were obtained from 398 patients and 207 caregivers. Patients' self-rated hypoparathyroidism-related symptom severity was none (3%), mild (32%), moderate (53%), or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe, or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%), and tingling (51%) over a 7-day recall period. Impacts (rated "somewhat" or "very much") were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work, and 63% for family relationships. Inverse relationships were observed between patient self-rated overall symptom severity and HRQoL and health status assessment scores-the greater the symptom severity, the lower the SF-36 and EQ-5D-5L scores. Caregiver burden increased with patient self-rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; severe, 12.5 MCSI.; Conclusion: Patients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden.
Purpose: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults. As caregiving is a dynamic, complex process across the trajectories, this study aims to examine the factors associated with caregiving burden in those caring for adults with epilepsy.; Method: This is a cross-sectional, survey-based study in which participants responded to questionnaires regarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient.; Results: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education. Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09). Furthermore, multiple regression analysis identified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p < 0.001). Stepwise regression highlighted family functioning as the main predictor (β = 0.299, p < 0.001). The total ZBI score was positively correlated with caregivers' reported levels of depression (r = 0.549, p < 0.001), anxiety (r = 0.599, p < 0.001) and stress (r = 0.576, p < 0.001) subscales in DASS-21, and negatively correlated with IEQoL (r=-0.637, p < 0.001).; Conclusion: This study shows that caregivers' burden is highly associated with the family system (family functioning, support and number of caregivers), besides demographics, psychosocial and clinical characteristics. Future research is required to learn how to support this sub-group of caregivers within the family system.
Objective: We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. Method: In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). Results: Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β =.157, P <.001), an increased amount of care time (β =.188, P <.001), and a higher level of burden (β =.167, P <.001) were associated with greater CG's benefits. Conclusion: CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.
Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult's fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.
Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role.
Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified Support received during advanced stages as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams' social workers.
Purpose We describe an approach to rapidly adapt and implement an education and skills improvement intervention to address the needs of family caregivers of functionally impaired veterans-Helping Invested Families Improve Veterans' Experience Study (HI-FIVES). Design Prior to implementation in eight sites, a multidisciplinary study team made systematic adaptations to the curriculum content and delivery process using input from the original randomized controlled trial (RCT); a stakeholder advisory board comprised of national experts in caregiver education, nursing, and implementation; and a veteran/caregiver engagement panel. To address site-specific implementation barriers in diverse settings, we applied the Replicating Effective Programs implementation framework. Findings Adaptations to HI-FIVES content and delivery included identifying core/noncore curriculum components, reducing instruction time, and simplifying caregiver recruitment for clinical settings. To enhance curriculum flexibility and potential uptake, site personnel were able to choose which staff would deliver the intervention and whether to offer class sessions in person or remotely. Curriculum materials were standardized and packaged to reduce the time required for implementation and to promote fidelity to the intervention. Conclusions The emphasis on flexible intervention delivery and standardized materials has been identified as strengths of the adaptation process. Two key challenges have been identifying feasible impact measures and reaching eligible caregivers for intervention recruitment. Clinical Relevance This systematic implementation process can be used to rapidly adapt an intervention to diverse clinical sites and contexts. Nursing professionals play a significant role in educating and supporting caregivers and care recipients and can take a leading role to implement interventions that address skills and unmet needs for caregivers.
Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning. Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support. Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.
Background A long-term illness is stressful both for the person with the diagnosis and for his or her informal caregivers. Many people willingly assume the caregiving role, so it is important to understand why they stay in this role and how their motivation affects their health. Self-determination theory (SDT) is a theory of human motivation that has been successfully applied in human research domains. To our knowledge, there is no literature review on the application of SDT in a caregiver context. A systematic review of the literature could improve the understanding of motivation in caregiver work and contribute to the utility of SDT. Aim To describe and explore empirical studies of caregivers' motivation from the perspective of self-determination theory. Methods An integrative literature review according to Whittemore and Knafl was conducted with systematic repetitive searches in the MEDLINE, Scopus, PsychInfo, PsycNET, Chinal, Cochrane Library and EMBASE databases. The searches were performed from May through December 2018. The PRISMA diagram was used for study selection, and papers were assessed for quality based on the Mixed Methods Appraisal Tool. Data analysis consisted of a four-stage narrative analysis method. Result Of 159 articles, 10 were eligible for inclusion. All studies considered satisfaction of the three basic psychological needs for competence, autonomy and relatedness as essential in predicting the quality of caregivers' motivation and thereby their well-being. In this review, autonomous motivation was the most important determinant of caregivers' well-being. Conclusions Findings showed that SDT can be applied to identify, categorise, explain, predict, promote and support motivation among caregivers. This lends interesting support for SDT and promotes further study and application of the theory as a psychological approach to caregivers' health and health promotion.
This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.
Background Recent studies indicate that informal caregivers provide support to family members who are undergoing haemodialysis although the amount and type of activities provided and the burden of this is not well‐known. Objectives To analyse the burden and support activities of informal caregivers caring for adults receiving haemodialysis. Methods A cross‐sectional study recruited 178 adult informal caregivers (family members or close friends) of patients who had been undergoing haemodialysis for more than three months. Caregiver burden was measured by the Zarit Caregiver Burden Scale (ZCBS). Difficulty and time‐spent on caring tasks were assessed using the Oberst Caregiver Burden Scale (OCBS). Demographic characteristics were also collected. Results Most informal caregivers were female (55.6%) between 30 and 60 years of age (66%) and were a spouse of the person receiving haemodialysis. Overall, informal caregivers reported a high level of burden in caring (M = 40.15, standard deviation [SD] = 10.46) with 80.9% identifying the level as severe. However, the caring activities were perceived as slightly difficult (M = 24.5, SD = 8.81) and not requiring much time (M = 29.47, SD = 8.75). Predictors of greater informal caregiver burden were having their own health problems, greater time required to provide care, and doing more difficult tasks (R2 = 0.43, p < 0.01). Conclusion While the caregiving activities were not reported to take much time, there was a high level of burden on informal caregivers. Renal nurses are ideally placed to assess for caregiver burden and to provide education and support to them.
The purpose of this research was to explore the association between state and trait anxiety experienced by patients who had undergone traumatic amputation and their family caregivers. The sample studied consisted of 50 hospitalized patients who had undergone traumatic amputation and 50 family caregivers. The collected data included patients’ and caregivers’ characteristics and the State Trait Anxiety Inventory scores. Fifty percent of patients and caregivers scored below 50 and 47, respectively (median), in trait anxiety. In terms of state anxiety, at least 50% of patients and caregivers scored below 56 and 50.5, respectively. These values indicate moderate to high levels of the impact of amputation on the trait and state anxiety of amputees and their caregivers. A positive linear correlation was found between the trait and state anxiety of the patients as well as between the trait and state anxiety of caregivers, as expected (ρ = 0.915, P <.001, and ρ = 0.920, P <.001, respectively). A statistically significant positive correlation was also observed between state patient anxiety and state anxiety of caregivers (ρ = 0.239 and P =.039) and between trait patient anxiety and trait anxiety of caregivers (ρ = 0.322 and P =.030). More specifically, as the patient’s anxiety score (either trait temporary) increases, the score of the caregivers’ anxiety increases and vice versa. Nurses should be aware of the association between anxiety of amputees and caregivers and, therefore, work in multidisciplinary teams to maximize clinical outcomes for patients after amputation and their families.
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.
Background and objectives: Social factors have demonstrated to affect pain intensity and quality of life of pain patients, such as social support or the attitudes and responses of the main informal caregiver. Similarly, pain has negative consequences on the patient’s social environment. However, it is still rare to include social factors in pain research and treatment. This study compares patient and caregivers’ accuracy, as well as explores personality and health correlates of empathic accuracy in patients and caregivers. Materials and Methods: The study comprised 292 chronic pain patients from the Pain Clinic of the Vall d’Hebron Hospital in Spain (main age = 59.4 years; 66.8% females) and their main informal caregivers (main age = 53.5 years; 51.0% females; 68.5% couples). Results: Patients were relatively inaccurate at estimating the interference of pain on their counterparts (t = 2.16; p = 0.032), while informal caregivers estimated well the patient’s status (all differences p > 0.05). Empathic accuracy on patient and caregiver status did not differ across types of relationship (i.e., couple or other; all differences p > 0.05). Sex differences in estimation only occurred for disagreement in pain severity, with female caregivers showing higher overestimation (t = 2.18; p = 0.030). Patients’ health status and caregivers’ personality were significant correlates of empathic accuracy. Overall, estimation was poorer when patients presented higher physical functioning. Similarly, caregiver had more difficulties in estimating the patient’s pain interference as patient general and mental health increased (r = 0.16, p = 0.008, and r = 0.15, p = 0.009, respectively). Caregiver openness was linked to a more accurate estimation of a patient’s status (r = 0.20, p < 0.001), while caregiver agreeableness was related to a patient’s greater accuracy of their caregivers’ pain interference (r = 0.15, p = 0.009). Conclusions: Patients poorly estimate the impact of their illness compared to caregivers, regardless of their relationship. Some personality characteristics in the caregiver and health outcomes in the patient are associated with empathic inaccuracy, which should guide clinicians when selecting who requires more active training on empathy in pain settings.
Background: The challenges faced by caregivers of the elderly with chronic diseases are always complex. In this context, mobile technologies have been used with promising results, but often have restricted functionality, or are either difficult to use or do not provide the necessary support to the caregiver - which leads to declining usage over time. Therefore, we developed the Mobile System for Elderly Monitoring, SMAI. The purpose of SMAI is to monitor patients with functional loss and to improve the support to caregivers' communication with the health team professionals, informing them the data related to the patients' daily lives, while providing the health team better tools. Method: SMAI is composed of mobile applications developed for the caregivers and health team, and a web portal that supports management activities. Caregivers use an Android application to send information and receive care advice and feedback from the health team. The system was constructed using a refinement stage approach. Each stage involved caregivers and the health team in prototype release-test-assessment-refinement cycles. SMAI was evaluated during 18 months. We studied which features were being used the most, and their use pattern throughout the week. We also studied the users' qualitative perceptions. Finally, the caregiver application was also evaluated for usability. Results: SMAI functionalities showed to be very useful or useful to caregivers and health professionals. The Focus Group interviews reveled that among caregivers the use of the application gave them the sensation of being connected to the health team. The usability evaluation identified that the interface design and associated tasks were easy to use and the System Usability Scale, SUS, presented very good results. Conclusions: In general, the use of SMAI represented a positive change for the family caregivers and for the NAI health team. The overall qualitative results indicate that the approach used to construct the system was appropriate to achieve the objectives.
Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
Background: The relationship between pre-surgical distress and diurnal cortisol following surgery has not been investigated prospectively in caregivers of coronary artery bypass graft (CABG) patients before. We aimed to examine the relationship between pre-surgical anxiety and caregiver burden and diurnal cortisol measured 2 months after the surgery in the caregivers of CABG patients. Method: We used a sample of 103 caregivers of elective CABG patients that were assessed 28.86 days before and 60.94 days after patients’ surgery. Anxiety and caregiver burden were assessed using the anxiety subscale of the Hospital Anxiety and Depression Scale and the Oberst Burden Scale respectively. Saliva samples were collected to measure cortisol area under the curve with respect to ground (AUCg) and diurnal cortisol slope. Anxiety and caregiver burden were entered into linear regression models simultaneously. Results: While high levels of pre-surgical anxiety were positively associated with increased follow-up levels of AUCg (β = 0.30, p = 0.001), greater pre-surgery perceived burden score was associated with steeper cortisol slope (β = 0.27, p = 0.017) after controlling for a wide range of covariates. Conclusion: These outcomes support the utility of psychological interventions aimed to increase the awareness of caregiving tasks and demands in informal caregivers.
Background: Persons with chronic heart failure are living longer. These patients typically live in the community and are cared for at home by informal caregivers. These caregivers are an understudied and stressed group. Methods: We are conducting a two-arm, randomized controlled trial of 250 caregivers of persons with chronic heart failure to evaluate the efficacy of a health coaching intervention. A consecutive sample of participants is being enrolled from both clinic and hospital settings at a single institution affiliated with a large medical center in the northeastern US. Both the intervention and control groups receive tablets programmed to provide standardized health information. In addition, the intervention group receives 10 live coaching sessions delivered virtually by health coaches using the tablets. The intervention is evaluated at 6-months, with self-care as the primary outcome. Cost-effectiveness of the intervention is evaluated at 12-months. We are also enrolling heart failure patients (dyads) whenever possible to explore the effect of caregiver outcomes (self-care, stress, coping, health status) on heart failure patient outcomes (number of hospitalizations and days in the hospital) at 12-months. Discussion: We expect the proposed study to require 5 years for completion. If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily be scaled to. support millions of caregivers worldwide.
The reviewed study addresses the needs of the family caregivers of transplant patients in Iran and as the title suggests examines both psychosocial needs and quality of life (QoL), the results of which highlighted the importance of the provision of assurance and information for family caregivers.
Background: Persons with neurological conditions predominantly receive their care from informal caregivers in India. The day-to-day caring of these persons requires tireless effort, energy, and empathy, and can often impact the quality of life of caregivers. In this study, we assess the impact of caregiving on the quality of life of informal caregivers. Materials and Methods: Fifty caregivers of patients with neuro-rehabilitation needs admitted in the neuro-rehabilitation ward of our hospital were recruited for this study. A descriptive research design, burden assessment schedule, and a self-reporting questionnaire were used to assess the distress level. The data collected were analyzed using descriptive, parametric, and nonparametric statistics. Results: Of the 50 caregivers recruited, 32 were female and 28 were male. The caregivers in our cohort were predominantly over 40 years of age. Thirty caregivers were from nuclear family and 36 families had below poverty line card. Majority of the caregivers reported physical and mental health burden due to their caregiving role. This was followed by need for external support to facilitate their caregiving role. Overall, the burden perceived by the caregivers ranged from moderate to severe. Conclusion: The caregivers come from diverse backgrounds, but nonetheless, they experienced significant physical and emotional burden while caring for the ill person at home. Providing adequate training and socioeconomic support to the caregivers may be helpful in reducing their burden.
Background: Spinal cord injury (SCI) is a life-changing experience for the individuals with SCI and their families. This study aimed to investigate physical strategies used for overcoming physical disability in individuals with SCI. Methods: In this qualitative study, 17 SCI persons and 13 family caregivers were selected by a purposeful sampling. Settings of the study were Brain and SCI research (BASIR) center of Tehran University of Medical Sciences and Southern Social Welfare Center of Tehran and SCI Association of Tehran, Iran. Data were collected by face-to-face semi-structured interviews, which were continued until data saturation. The gathered data were concurrently analyzed by the content analysis method. Results: The data analysis revealed one main theme (towards overcoming physical disability) and three sub-themes: 1) physical rehabilitation by various methods; 2) tendency towards the use of alternative medical methods; and 3) making effort for self-reliance. Conclusion: The participants used physiotherapy and occupational therapy as an effective and essential approach offered by the healthcare team. Some individuals with SCI with help of their family had invented simple rehabilitation equipment for help to their physical rehabilitation. However, most participants had referred to different complimentary medicine specialists based on advice friends and relatives and they often had spent a lot of time and money ineffectively. Therefore, they need training and support of the healthcare team as well as social support to achieve physical independence and physical recovery. Further research is suggested to investigate the barriers to achieving physical empowerment in people with SCI in Iran.
Objectives: Informal caregivers of veterans are providing care for a population whose specialized care needs require increased investments on the part of caregivers and for longer durations. Empirical evidence shows negative mental health effects on these caregivers at rates that outpace those seen in caregivers in the general population. With a growing need and limited resources, effective interventions are needed to improve mental health outcomes in this special population of caregivers. Methods: This pilot, randomized control trial tested the effectiveness of a mindfulness-based intervention at improving perceived stress, depressive symptoms, anxiety, and worry compared to waitlist controls in a sample of 23 caregivers of veterans. Results: The Mann-Whitney U tests used to determine whether groups differed in change scores (post minus pre) indicated that there were significant differences between the mindfulness and waitlist control group in perceived stress (U = 21.5, p =.006, r = .57), anxiety (U = 24.0, p =.009, r = .54), and worry (U = 29.5, p =.024, r = .47). Results from the Wilcoxon signed-rank tests indicated that caregivers in the mindfulness group reported a significant reduction in perceived stress (Z = − 2.50, p =.013, r =.75) and anxiety (Z = − 2.81, p =.005, r =.85), whereas the waitlist control group reported higher mean symptoms at the end of the intervention period. Conclusions: Given these promising results, policymakers, health practitioners, and veteran-related programs should increase efforts to provide caregivers of veterans with mindfulness-based interventions to improve mental health outcomes.
Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD. Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
Objective: To investigate the caring burden and its determinants of primary informal caregiver of patients with chronic wound. Approach: A prospective cross-sectional study of 132 pairs of chronic wound care recipients and their informal caregivers was included. The characteristics of patients and their informal caregivers as well as caregiver burden assessment by the caregiver burden inventory (CBI) were measured. Single factor analysis and multiple regression analysis were carried out to explore the independent determinants of caregiver burden on caring for patients with chronic wound. Results: Most of the caregivers were female with mean age of 54.57 ± 13.35 years, and 58.3% of the caregivers were adult children. The mean CBI score was 34.21 ± 9.69 at a medium level. The following variables increased the CBI scores of caregivers: long caring time per day for patients, powerlessness status of patients, insufficient self-efficacy, and social support of caregivers, the model was able to explain 67.5% of variance in caregiver burden (F = 47.167, p = 0.000, R2 = 0.675, adjusted R2 = 0.660). Innovation: Caring burden of patients with chronic wound as a key consideration of patient-centered wound care has received relatively little attention. In this study we report the status of caring burden and reveal its determinants of primary informal caregiver of patients with chronic wound. Conclusion: Wound professionals are suggested to pay attention to the caregiver burden of patients with chronic wound and develop family-centered intervention support service system according to the determinants of caregiver burden to alleviate the caregiver burden.
The stress process model of caregiving posits that caregivers' internal psychosocial resources may serve as buffers between the stress associated with caregiving and well‐being. Empirical support for the stress process model exists for several caregiving contexts, but little research has investigated the Parkinson's disease caregiving experience in Mexico. Using a cross‐sectional, correlational design, the objective of this study was to examine whether resilience moderates the relation between perceived stress and health‐related quality of life (HRQOL) among Parkinson's disease caregivers in Mexico. Data were collected from April 2015 to February 2016 during outpatient neurology appointments in Mexico City, Mexico. Participants included informal caregivers (N = 95) for a family member with Parkinson's disease. Participants completed a battery of questionnaires assessing their level of perceived stress, resilience, and HRQOL. Regression analyses indicated that resilience moderated the inverse relation between perceived stress and mental HRQOL. However, contrary to hypotheses, resilience did not moderate the relation between stress and physical HRQOL. Findings shed light on resilience as a potential protective factor for mental HRQOL among Parkinson's disease caregivers in Mexico and indicate that resilience may be beneficial to target in mental health promotion interventions.
Background: Families of patients with organ transplants experience many problems, both with the onset of illness and during the hospitalisation of their relative for an organ transplant. The healthcare providers try their best to give high-quality care to patients. However, they neglect quality of life and psychosocial needs of family caregivers. Aims: This study aimed to assess the psychosocial needs and quality of life of the family caregivers of post-transplant patients and the relationship between these two variables. Methods: This descriptive correlational study was conducted on liver, kidney and bone marrow transplant wards in the largest transplant centre affiliated with a university of medical science in south-eastern Iran. The sample included 230 family caregivers of post-transplant patients, who were selected using quota sampling. Data were collected using the 45-item questionnaire of psychosocial needs (the Critical Care Family Needs Inventory) with five dimensions (assurance, comfort, information, proximity and support), and the Short Form-36 Quality of Life questionnaire with eight scales (physical functioning, physical problems, emotional problems, social functioning, pain, vitality, mental health and perception of health). In the Critical Care Family Needs Inventory, 1 indicates not important and 4 very important. In the Short Form-36 Quality of Life questionaire, 0 indicates the worst health and 100 the best health. Results: The participants rated the mean of their psychosocial needs as important (3.18 ± 0.27). Also, the mean of quality of life of participants was at an undesirable level (45.17 ± 92.66). The psychosocial needs of the caregivers showed a poor, inverse significant relationship with their quality of life (r = −0.16, p = 0.01). Conclusion: The results showed that with increasing psychosocial needs of family caregivers of post-transplant patients, their quality of life declines. Healthcare providers should implement developed plans and appropriate strategies to fulfil psychosocial needs and improve the quality of life of family caregivers of these patients.
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.
Purpose: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other’s QoL and determine the dyadic patterns. Methods: A cross-sectional descriptive design was used. The actor–partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. Results: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients’ depressive symptoms negatively influence their mental QoL, and caregivers’ anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients’ depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers’ anxiety worsening patients’ physical QoL and caregivers’ depression improving patients’ physical QoL. Conclusions: The results suggest that caregivers’ psychological distress influences caregivers’ mental QoL and patients’ physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.
Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.
Family caregivers often serve as unpaid members of the home and community-based care workforce for people with serious illness; as key partners in the home-clinic continuum, they should be included in health care teams. The Campaign for Inclusive Care is an initiative within the Veterans Affairs health care system to improve provider practices for including caregivers of military members in treatment planning and decisions. We defined inclusive care using a literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of the caregiver role, system policies for inclusion, assessment of caregivers' capacity, explicit involvement of caregivers, and mutuality in caregiver-provider communication. We recommend solutions based on this definition that can inform development of a national caregiver strategy, required of the Department of Health and Human Services by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018.
Background: There is insufficient research into informal caregivers' quality of life (QoL) in Poland. The purpose of this work is to study predictors that considerably affect QoL of informal caregivers (IC) providing home care for seniors with chronic diseases and a functional performance deficit. Materials and methods: In the cross-sectional research design, ICs were randomly chosen among the geriatric population receiving care in 5 primary health care settings. The WHOQoL-AGE questionnaire was used to assess QoL of ICs (n=138). The Barthel scale and Polish version of the Abbreviated Mental Test Score (AMTS) were applied to assess individuals with chronic diseases and functional and mental performance deficits (n=138). The Geriatric Depression Scale Short Form (GDS-SF) was used to measure the extent of risk of depressive symptoms in care-receivers. A hierarchical regression analysis was carried out to determine predictors of caregivers' QoL. Results: Mean values in the group of seniors provided with home care were as follows: the Barthel scale M=43.20, SD=27.06, the AMTS M=7.78 (SD=1.65), and the GDS-SF M=7.34 (SD=3.10). QoL of ICs (the WHOQoL-AGE) was M=70.14 (SD=15.31). Significant predictors of caregivers' QoL turned out to be support in care given by others β =0.605, p<0.001, experience in care β =-0.220; p<0.001, caregivers' health self-assessment β =0.174, p<0.001, and depressive disorders in care-receivers GDS β = −0.178, p<0.001. Conclusions: The QoL of ICs who provide care for individuals with chronic diseases and a functional performance deficit improves with an increase in the support they receive from others, their higher health self-assessment, and greater experience in care. An increase in depressive symptoms in care-receivers determines a lower level of caregivers' QoL.
We estimated the economic costs of informal care in the community from 2015 to 2030, using an Australian microsimulation model, Care&WorkMOD. The model was based on data from three Surveys of Disability, Ageing, and Carers (SDACs) for the Australian population aged 15–64 years old. Estimated national income lost was AU$3.58 billion in 2015, increasing to $5.33 billion in 2030 (49% increase). Lost tax payments were estimated at AU$0.99 billion in 2015, increasing to AU$1.44 billion in 2030 (45% increase), and additional welfare payments were expected to rise from $1.45 billion in 2015 to AU$1.94 in 2030 (34% increase). There are substantial economic costs both to informal carers and the government due to carers being out of the labour‐force to provide informal care for people with chronic diseases. Health and social policies supporting carers to remain in the labour force may allow governments to make substantial savings, while improving the economic situation of carers.
Objectives: (a) To assess whether 3 changeable environmental variables (social support, professional support, and financial hardship) contribute to explaining differences in well-being of family caregivers after traumatic brain injury (TBI), above and beyond the influence of neurobehavioral functioning. (b) To assess the unique and relative contribution of social support, professional support, and financial hardship to life satisfaction of family caregivers.; Participants: Adult family caregivers (n = 136) of individuals who received inpatient rehabilitation following a TBI.; Measures: The Social Provisions Scale; Brief Scale of Financial Hardship after Brain Injury; Satisfaction with Life Scale; and adapted scales measuring professional support and neurobehavioral functioning.; Design: Cross-sectional study using survey methodology.; Results: Social support, professional support, and financial hardship explained a significant amount of variance in life satisfaction after controlling for neurobehavioral functioning (R change = 0.34, considered a large effect size). Social support and financial hardship were significant unique predictors within the model, but professional support was not.; Conclusion: Social support and financial hardship are prominent environmental variables that may hold promise for targeted intervention development and testing designed to support family adaptation after TBI.
In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers' satisfaction with support and to identify factors associated with caregivers' satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients' HY stage (P=0.005) and caregivers' QoL (Alzheimer's Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.
Problem/background: Post-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. Aim: To capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. Methods: A modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software's voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. Findings: Eleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. Discussion: Peridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. Conclusion: Generic community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.
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.
Background: Podoconiosis, also known as mossy foot or endemic non-filarial elephantiasis, is a preventable form of lower-leg lymphoedema caused by prolonged (typically barefoot) exposure to soil derived from volcanic rocks. Acute adenolymphangitis (also called ‘acute attack’) is a serious complication of podoconiosis resulting in significant symptoms and worsening disability. Despite the well-known morbidity associated with podoconiosis, to date there have been no studies looking at the impact, or burden, of podoconiosis on caregivers. This study explored the experiences and impact of acute attacks on the caregivers of those with podoconiosis in one endemic district of Ethiopia. Methods/Principal findings: This qualitative study was based in Wayu Tuka woreda (district), Oromia, Western Ethiopia. 27 semi-structured interviews of those with podoconiosis and their caregivers were conducted in June 2018. Here we report the findings from the caregiver’s interviews. Data were analysed using NVivo 12. Directed content analysis, a qualitative approach related to thematic analysis, was used to analyse the results. This study highlights a previously unreported impact of acute attacks on the caregivers of those affected by podoconiosis. The findings demonstrate the significant social and financial pressures placed on podoconiosis-affected families which are exacerbated during acute attacks. This study also highlighted the emotional burden experienced by caregivers, the range of care activities placed on them and the limited support available. Conclusions: This study found a significant impact on the caregivers of those with podoconiosis, especially during acute attacks, in in Wayu Tuka woreda. It also highlighted the limited support available to caregivers. Further research is needed to understand whether this impact applies to podoconiosis caregivers across Ethiopia, and beyond, and to establish if there are wider implications of this important consequence of podoconiosis, for example on the economy and caregivers’ mental and physical health.
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.
Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods: Training workshops with MND Association visitors (AVs) and staff in southwest and northwest England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interview evaluated use of the CAT. Findings: Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, help to focus on carers' needs and improve communication with carers. Conclusion: The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.
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.
Adults with type 2 diabetes mellitus (T2DM) often receive self-management support from adult children, siblings or close friends residing outside of their home. However, the role of out-of-home support in patients’ self-management and well-being is unclear. Patients (N = 313) with HbA1c > 7.5% were recruited from community primary care clinics for a mobile health intervention trial and identified an out-of-home informal support person, herein called a CarePartner: 38% also had an in-home supporter. We tested cross-sectional adjusted associations between CarePartner relationship characteristics and patients’ self-management, diabetes distress, and HbA1c and whether having an in-home supporter modified these associations. Greater CarePartner closeness was associated with a greater odds of perfect medication adherence (AOR = 1.19, p = .029), more fruit/vegetable intake (β = 0.14, p = .018), and lower diabetes distress (β = − 0.14, p = .012). More frequent CarePartner contact was associated with better HbA1c among patients with an in-home supporter but with worse HbA1c among patients without an in-home supporter (interaction β = − 0.45, p = .005). Emotional closeness with a CarePartner may be important for supporting T2DM self-management and reducing diabetes distress. CarePartners may appropriately engage more frequently when patients with no in-home supporter have poorly controlled diabetes.
Background/Objective: Informal caregivers (e.g., family and friends) are at risk for developing depression, which can be detrimental to both caregiver and patient functioning. Initial evidence suggests that resiliency may reduce the risk of depression. However, gender differences in associations between multiple psychosocial resiliency factors and depression have not been examined among neuroscience intensive care unit (neuro-ICU) caregivers. We explored interactions between caregiver gender and baseline resiliency factors on depression symptom severity at baseline through 3 and 6 months post-discharge. Methods: Caregivers (N = 96) of neuro-ICU patients able to provide informed consent to participate in research were enrolled as part of a prospective, longitudinal study in the neuro-ICU of a major academic medical center. Caregiver sociodemographics and resiliency factors (coping, mindfulness, self-efficacy, intimate care, and preparedness for caregiving) were assessed during the patient’s hospitalization (i.e., baseline). Levels of depressive symptoms were measured using the Hospital Anxiety and Depression Scale at baseline, 3 months, and 6 months post-discharge. Results: Baseline depressive symptoms predicted depressive symptoms at both 3- and 6-month follow-ups, with no difference at any time point in rates of depression by gender. At baseline, greater levels of coping, mindfulness, and preparedness for caregiving were individually associated with lower levels of concurrent depression regardless of gender (ps < 0.006). The main effect of baseline coping remained significant at 3-month follow-up (p = 0.045). We observed a trend-level interaction between gender and baseline intimate care, such that among male caregivers only, high baseline intimate care was associated with lower depression at 3-month follow-up (p = 0.055). At 6-month follow-up, we observed a significant interaction between caregiver gender and baseline intimate care, such that male caregivers reporting high intimate care reported lower symptoms of depression than females reporting high intimate care (p = 0.037). Conclusions: Results support implementation of psychosocial resiliency interventions for caregivers of patients admitted to the neuro-ICU early in the recovery process. Male caregivers may particularly benefit from strategies focused on increasing intimate care (e.g., physical and emotional affection with their loved one) and quality of the patient-caregiver dyadic relationship.
Introduction: Health disparities among immigrants exist across socioecological domains. While Chinese immigrants face increased risk for coronary heart disease (CHD) after migration, the reasons are not well understood. Method: This descriptive qualitative study collected 18 semistructured interviews with Chinese immigrants with CHD and family carers from two Australian hospitals. Analysis was guided by the social-ecological model. Results: Poor knowledge and limited English proficiency increased CHD risk and difficulty navigating health care systems/resources. Interpersonal and family factors positively influenced health-seeking behaviors, acceptance of cardiac procedures, adoption of secondary preventive behaviors and information acquisition through social networks. A lack of culturally specific health information and programs in Chinese languages was described. Ethnic concordance between Chinese doctors and patients improved health literacy and engendered trust. Discussion: Culturally specific interventions could include health promotion materials in Chinese, inclusion of family in educational programs, and Chinese-focused public health campaigns about warning signs of heart attack.
Background: Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships.; Methods: A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI's (n = 19) and their family caregivers' (n = 15) experiences.; Results: Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal.; Conclusions: These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.
Background: Epilepsy is the 4th most common neurological disorder and is characterized by recurrent, unpredictable seizures. The ability to forecast seizures is a significant unmet need and would have a transformative effect on the lives of people living with epilepsy. In an effort to address this need, the Epilepsy Foundation has committed effort and resources to promote the development of seizure forecasting devices (SFD). Objective: To promote user-centered design of future SFD, we sought to quantify patient and caregiver preferences for the potential benefits and risks of SFD. Methods: A community-centered approach was used to develop a survey incorporating a novel best–worst scaling (BWS) to assess preferences for SFD. A main-effect orthogonal array was used to design and generate 18 "prototypes" that systematically varied across six attributes: seizure forecasting probability, seizure forecasting range, inaccuracy of forecasting, amount of time required to use the device, how the device is worn, and cost. The dependent variable was the attributes that respondents selected the best and worst in each profile, and a choice model was estimated using conditional logistic regression, which was also stratified and compared across patients and caregivers. Respondents also indicated that they would accept each of the prototype SFDs if it were real. These acceptance data and net monetary benefits (relative to the least preferred SFD) were explored. Results: There were 633 eligible respondents; 493 (78%) completed at least one task. Responses indicated that 346 (68%) had epilepsy, and 147 (29%) were primary caregivers or family members of someone with epilepsy. The data show that short forecasting range is the most favored among experimental attributes, followed by mid forecasting range and notification of high chance of seizure. Having the device implanted is the least favorable attribute. Stated preferences differed between patients and caregivers (p < 0.001) for range of forecasting and inaccuracy of device. Caregivers preferred any range of forecasting, regardless of length, more than patients. Patients cared less about inaccuracy of the device compared to caregivers. The groups also differ in impact of fear of having seizures (versus actually having seizures) (p = 0.034) and on device acceptance. The acceptance of devices ranged from 42.3% to 95%, with caregivers being more likely to use a device (p < 0.05) for the majority of device profiles. Acceptance of devices varied with net monetary benefit of the best device being $717.44 more per month relative to the least preferred device. Conclusion: Our finding extends previous calls for seizure forecasting devices by demonstrating the value that they might provide to patients and caregivers affected by epilepsy and the feature that might be most and least desirable. In addition to guiding device development, the data can help inform regulatory decisions makers.
Objectives: Informal caregivers are vulnerable to poor mental health and quality of life (QoL). Self-compassion may protect against this. This study investigated depression and QoL in partner caregivers of people with a long-term or neurological condition (e.g. dementia or spinal cord injury) and explored the extent to which QoL and self-compassion are predictive of depression. Design: A cross-sectional, questionnaire design. Methods: Participants were recruited from charities and support groups. Partner caregivers (N = 57) completed assessments of depression, QoL, and self-compassion. Results: Over half (61.8%) of caregivers experienced at least mild symptoms of depression, illustrating high prevalence among caregivers compared with the general population. Overall QoL was poor compared with non-caregivers. QoL was poorest in the physical domain (M = 51.9, SD = 10.1) and highest in the environmental domain (M = 64.9, SD = 15.8). Both self-compassion and QoL were significant predictors of depression (p < 0.05), explaining 48.8% of the variance. Hours spent providing care was also significantly predictive of depression (p < 0.05). Conclusion: Self-compassion and QoL may be important targets for supportive interventions for this population. This study underscores the importance of developing supportive interventions for informal partner caregivers, and developing self-compassion in these.
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.
We performed this cross-sectional study with 72 chronic obstructive pulmonary disease (COPD) patients and their family caregivers to analyze relationship of physical and psychological health status between COPD patients and caregivers. Most caregivers were female (100%). Caregiver depression and burden were significantly associated with caregiving hours. In path analysis, the higher the patient's social support, the higher the patient's self-efficacy. The higher the patient's self-efficacy, the lower the care burden of the caregiver. Based on our results, there was a significant correlation of physical and psychological factors between patients and family caregivers.
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.
Huntington's disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the disease have a great impact on the quality of life of family carers. The caregivers are called the "forgotten people" in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington's Disease Quality of Life Battery for carers (HDQoL-C) within a Polish population. A total of 90 carers recruited from the Enroll-HD study in Polish research centers of the European Huntington's Disease Network completed a polish translation of the HDQoL-C. Data were subjected to Principle Components Analysis (PCA) and reliability measures. The Polish version of the shortened versions of the HDQoL-C is similarly valid compared to the original English version and suitable for use within this population. The HDQoL-C has previously demonstrated a wide range of benefits for practitioners in capturing and understanding carer experience and these benefits can now be extended to Polish speaking populations.
Background: A growing body of research has identified health-related quality-of-life effects for caregivers and family members of ill patients (i.e. 'spillover effects'), yet these are rarely considered in cost-effectiveness analyses (CEAs).; Objective: The objective of this study was to catalog spillover-related health utilities to facilitate their consideration in CEAs.; Methods: We systematically reviewed the medical and economic literatures (MEDLINE, EMBASE, and EconLit, from inception through 3 April 2018) to identify articles that reported preference-based measures of spillover effects. We used keywords for utility measures combined with caregivers, family members, and burden.; Results: Of 3695 articles identified, 80 remained after screening: 8 (10%) reported spillover utility per se, as utility or disutility (i.e. utility loss); 25 (30%) reported a comparison group, either population values (n = 9) or matched, non-caregiver/family member or unaffected individuals' utilities (n = 16; 3 reported both spillover and a comparison group); and 50 (63%) reported caregiver/family member utilities only. Alzheimer's disease/dementia was the most commonly studied disease/condition, and the EQ-5D was the most commonly used measurement instrument.; Conclusions: This comprehensive catalog of utilities showcases the spectrum of diseases and conditions for which caregiver and family members' spillover effects have been measured, and the variation in measurement methods used. In general, utilities indicated a loss in quality of life associated with being a caregiver or family member of an ill relative. Most studies reported caregiver/family member utility without any comparator, limiting the ability to infer spillover effects. Nevertheless, these values provide a starting point for considering spillover effects in the context of CEA, opening the door for more comprehensive analyses.;
Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (r E = − 0.577, r PNES = − 0.025); seizure severity and carer depression (r E = 0.248, r PNES = − 0.333) and mental wellbeing (r E = − 0.356, r PNES = 0.264); patient depression and carer anxiety (r E = 0.387, r PNES = − 0.266); and patient anxious attachment and carer anxiety (r E = 0.382, r PNES = 0.155). Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES. • Carers for people with seizure disorders experience high levels of depression and anxiety. • Mental wellbeing in this group correlates with relationship conflict, and patient and carer attachment styles. • These associations differ between carers for people with epilepsy and for those with psychogenic non-epileptic seizures.
Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease and other dementia (AD), Parkinson’s Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations
Background: The family caregivers of patients undergoing hemodialysis are faced with multiple physical, psychological, social, economic, and spiritual problems that increase their care burden. The present study was conducted to determine the effects of a family-based training program on the care burden of family caregivers of patients undergoing hemodialysis.; Materials and Methods: The present controlled, randomized, clinical trial was conducted on 70 caregivers of patients undergoing hemodialysis in Ali Asghar and Zahray-e Marzieh hospitals in Isfahan, Iran, in 2017. After conducting convenient sampling, 70 participants were randomly assigned into 2 groups (35 in each group). The experimental group received the family-based training program and the control group received usual care plan. Data were collected using the Zarit Burden Scale before, immediately after, and 1 month after the intervention and were then analyzed by independent t-test, Chi-square, and Analysis of Covariance (ANCOVA) repeated measure.; Results: The results showed that both groups were homogeneous in terms of their demographic data and showed no significant differences. The main effect of group was significant, indicating a significant decrease in care burden in the experimental group after the intervention (F1,67 = 1089, p < 0.001). However, the interaction of time and group was not significant, indicating insignificant difference in burden 1 month after intervention (p > 0.05).; Conclusions: Since the family-based training program successfully reduced the burden of care immediately after intervention, similar family-based training programs are recommended to be designed and developed. However, insignificant time effect suggests further researches of long time effects of such program.
Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients' subjective feelings of being a burden and on caregivers' willingness to carry the burden in home care. This article uses empirical material from semi-structured interviews conducted with older people affected by multiple chronic conditions and in need of long-term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home-care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical-ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.
Background and Purpose: This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients.; Methods: We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years]. We assessed the quality of life, fatigue, stress, and depression of the caregivers using the 36-item Short Form Health Survey, Krupp Fatigue Severity Scale, Kingston Caregiver Stress Scale, and Hamilton Scale for Depression, respectively. The disability status of the patients was assessed using the Kurtzke Expanded Disability Status Scale. We used linear regression models to identify possible correlations between all of the aforementioned scales, while multivariable logistic regression models were employed to assess the correlations of caregiver fatigue with caregiver characteristics and patient disability.; Results: The linear regression analyses revealed that caregiver fatigue was positively associated with stress and negatively correlated with both physical health status and mental health status. Caregiver stress was positively associated with depression and negatively correlated with both physical health status and mental health status. Depression was negatively correlated with both caregiver physical health status and mental health status. In multivariable logistic regression analysis, caregiver fatigue was found to be independently associated with education status [odds ratio (OR)=0.61, 95% CI=0.37 to 0.99], history of chronic disease (OR=5.52, 95% CI=1.48 to 20.55), other chronic diseases in the family (OR=7.48, 95% CI=1.49 to 37.47), and the disability status of the patient (OR=1.36, 95% CI=1.03 to 1.80).; Conclusions: Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. Caregiver fatigue is independently associated with education status, history of chronic disease, other chronic disease in the family, and patient disability.
This review systematically reviewed the therapeutic effects for people with LTCs and their family caregivers learning MBIs [Mindfulness-based interventions] together in a partnership. The review asked what changes in psychological wellbeing or interpersonal factors do people with LTC and their family caregivers experience when learning MBI together in a partnership.
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.
Introduction: Systemic vasculitis (SV) is associated with substantial economic impact to patients and the healthcare system but little is known about the burden of SV on informal caregivers. We evaluated the objective caregiving burden experienced by informal caregivers of patients with SV.; Methods: We surveyed adult patients and their informal caregivers on the physical, emotional, social and economic impacts of SV. We asked patients about the extent to which they felt they were a burden to their identified caregivers. Caregivers reported the direct and indirect economic impact of SV, including employment disturbance, income loss and relative time investment of caregiving for their care recipient's SV. We used the Inventory of Caregiving Activities Questionnaire to compute the objective caregiving burden.; Results: We analysed data from 68 SV patient-caregiver dyads. Patients reported moderate levels of subjective burden to their caregivers. Over one-quarter of caregivers reported ever having lost some income owing to caregiving for SV. Caregivers reported spending a median of 19 weekly hours on various caregiving tasks, including a median 17 weekly hours on household activities.; Discussion: Given the extended hours that caregivers spend caring for their care recipient, intervention targets should aim to reduce caregiver burnout in the SV population. Future research should examine the relationship between the objective burden of caregiving for SV and the overall physical health, mental health and quality of life of caregivers.
Family caregivers are an increasingly diverse group of individuals who provide significant amounts of direct and indirect care for loved ones with long-term chronic illnesses. Caregiver needs are vast, particularly as these relate to the caregiver"s quality of life. However, caregivers are often unlikely to address their personal and health-related concerns. Unmet needs combined with the caregiving role often lead to high levels of caregiver anxiety. Unaddressed, this anxiety is likely to result in poor health and low quality of life. Nurses, along with the health care team, are well positioned to assess, monitor, intervene, and reassess anxiety levels in caregivers using standardized screening tools across care settings. This article focuses on the family caregiver anxiety symptom in community-based settings, where health care providers have unique opportunities to detect this symptom in a familiar environment and begin immediate intervention leading to promotion of quality of life for the caregiver and subsequently the care recipient. Additional research efforts should be focused on health care provider goals of care, dyadic assessments, and monitoring of caregiver needs while caring for their loved ones aging in place.
Background: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. Methods: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3–24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. Results: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. Conclusions: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.
Objective: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers.; Design: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis.; Data Sources: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015.; Eligibility Criteria For Selecting Studies: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia.; Results: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation.; Conclusion: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden.; Prospero Registration Number: CRD42016048191.
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.
Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.; Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.; Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.; Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Implications for Rehabilitation Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.
Objectives: To explore the feasibility and efficacy of web-based mindfulness training for carers of people with spinal cord injury (SCI).; Design: Randomized controlled feasibility study with 3-month follow-up.; Setting: Community setting.; Participants: Spouses or family caregivers (N=55) of people with SCI and chronic neuropathic pain were recruited via the direct care team and advertisements. Participants were older than 18 years (no upper age limit), with Internet access for the duration of the study. Participants were randomly allocated to an 8-week online mindfulness training intervention (n=28), or to receive 8 weeks of psychoeducational materials on SCI and chronic pain (n=27).; Interventions: An established web-based, mindfulness training course was delivered over 8 weeks. Participants completed 10 minutes of mindfulness practices, twice per day, 6 days per week, totaling 960 minutes. The control group received a weekly e-mail with psychoeducational materials (based on the established elements) on SCI and pain for 8 weeks.; Main Outcome Measure: Depression severity.; Results: Mindfulness reduced depression severity more than psychoeducation at T2 (mean difference= -.891; 95% confidence interval,-1.48 to -.30) and T3 (mean difference=-1.96; 95% confidence interval, -2.94 to -.97). Mindfulness training also reduced anxiety at T2 (mean difference=-.888; 95% confidence interval, -1.40 to -.38) and T3 (mean difference=-2.44; 95% confidence interval, -3.20 to -1.69).; Conclusions: Results indicate that Internet-delivered mindfulness training offers unique benefits and is viable for caregivers of people with SCI and chronic neuropathic pain. Further work should explore the feasibility of combined education and mindfulness training incorporating both patient and caregiver, for optimum benefit.
Introduction: Informal family caregivers play an increasingly important role in healthcare. Despite their role in ongoing management and coordination of care, caregiver satisfaction with the healthcare services care recipients receive has been understudied. We sought to assess what influences caregiver satisfaction with inpatient care provided to their care recipient among caregivers of veterans with traumatic brain injury (TBI) and polytrauma.; Methods: Data from the Family and Caregiver Experience Survey, a national survey of caregivers of veterans with TBI and polytrauma, was used to explore factors associated with caregiver satisfaction with the care his/her care recipient received while an inpatient at a US Department of Veterans Affairs (VA) Polytrauma Rehabilitation Center. Caregiver and care recipient demographic and injury factors and potential addressable factors including social support, caregiver training received, and caregiver perceptions of being valued by the VA were evaluated for their associations with caregivers' satisfaction with their care recipients' healthcare.; Results: The majority of the 524 caregivers reported being mostly or very satisfied with their care recipient's inpatient care (75%, n = 393). Higher satisfaction with inpatient care was significantly associated with greater caregiver social support, receipt of training from the VA, and perceptions of being valued by the VA, both on univariate analysis and after controlling for care recipient TBI severity and caregiver's relationship to the care recipient.; Conclusions: Results suggest that supporting a strong social network for caregivers, providing caregiver training, and employing practices that communicate that family caregiving is valued by providers and healthcare organizations are promising avenues for improving caregiver satisfaction.
Aim: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia – Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient‐relevance. Methods: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. Results: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self‐management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self‐management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. Conclusions: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self‐management were explicitly addressed; enabling a patient‐centred approach to renal biopsies. Summary at a Glance: This paper, with a patient‐centred care perspective, provides opportunities to improve care for patients undergoing renal biopsy. Meanwhile, it identifies the importance of education, psychosocial support, and self‐management for both patients and caregivers.
Objectives: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). Methods: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis Findings: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. Conclusions: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.
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.
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.
Objective: Idiopathic Parkinson's disease (IPD) is a chronic progressive neurodegenerative movement disorder characterized by motor and non-motor symptoms that affects patients' quality of life and caregiver burden. The aim of our study was to assess the caregiver burden (CB) in early and late stages of disease and to search if there was a relationship between quality of life and CB.; Methods: A total of 74 patients who were diagnosed as having IPD by a movement disorder neurologist according to United Kingdom Brain Bank Criteria and their caregivers were randomly selected for participation the study. Staging of PD was performed by the neurologist based on the Hoehn and Yahr (H&Y) Scale. Disease severity was determined using the Unified Parkinson's Disease Rating Scale (UPDRS). CB was evaluated using the Zarit Caregiver Burden Inventory (ZCBI). The Hospital Anxiety and Depression Scale (HADS) and the Beck Depression Inventory (BDI) were used to assess anxiety and depressive symptoms in patients with IPD and their caregivers. The Short-Form Health Survey instrument (SF-36) was used to evaluate quality of life of the patients. The Mini-Mental State Examination (MMSE) was administered to patients to evaluate gross cognitive status.; Results: Seventy-four patients (male, 58.1%) were included in the study. The mean age of patients was 66.18±8.5 and the mean duration of disease was 67.23±41.8 months. According to the H&Y scale, the patients were divided into two groups; stage I-II as early stage and stage III-V as late stage. Group 1 (H&Y I-II) consisted of 40 patients, and group 2 (H&Y III-V) comprised 34 patients. The mean duration of disease and UPDRS scores were significantly higher in group 2 (p=0.003, p=0.001, respectively). Significant differences were found in group 2 according to BDI. There were significant differences between group 1 and 2 according to SF-36 subdomains such as general health, emotional role, social functioning, pain, and mental health (p=0.019, p=0.038, p=0.005, p=0.004, p=0.014, respectively). However, there were no significant differences between these two groups concerning CB.; Conclusion: Although CB was found in 35 (47.3%) caregivers in our study, we found no significant differences between the caregivers of patients with early and late-stage IPD patients. We thought that this might be due to strong family relationships and cultural dynamics in Turkey. Burden was found to be higher in depressive patients' CGs and CGs who had depressive symptoms. It is important to recognize depressive symptoms earlier to protect the relationship between the CG and the patient because the main providers of care are family members.
Background: Caring role, especially in chronic diseases, has a negative impact on the health of family caregivers and can affect their quality of life. Therefore, this study aimed to investigate the care burden and quality of life in family caregivers of hemodialysis patients and their relationship with some characteristics of caregivers and patients.; Methods: This study was conducted as a descriptive-analytic study in Isfahan from January to February 2017. Sampling was done using census. The number of participants was 254. The data gathering tools consisted of a three-part questionnaire including demographic characteristics, the Zarit questionnaire for caring burden, and SF-36 quality of life questionnaire. Data were analyzed using descriptive statistics, Pearson correlation coefficient test, Spearman's coefficient, ANOVA, and univariate general linear regression. A significant level of 5% was considered.; Results: The mean scores of the quality of life and caring burden were 30.54±9.89 and 44.98±6.82, respectively in caregivers. The age of the patient under care (P<0.001), cost of medications (P=0.008), and hours of care in 24 hours (P<0.001) had a significant relationship with care givers' quality of life. Also, univariate general linear regression revealed that care burden had a significant relationship with the quality of life (P=0.003).; Conclusion: Family caregivers who experienced more caring burden had a low quality of life. The researchers suggest that supportive and educational programs should be designed and implemented for this group of patients and their caregivers.
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.
Family members play key roles in the care of older adults with chronic illness. However, little is known about the negative consequences of caregiving in Sub-Sahara Africa. The current study examined the influence of caregivers' burden and coping ability on the health-related quality of life of caregivers of older adults with chronic illness. An exploratory sequential mixed methods study was conducted among 16 family members. Findings showed that caregivers experienced severe burden, coped moderately with the burden, and had poor quality of life. Furthermore, directed content analysis of the in-depth interviews uncovered six major themes: (a) Being Pulled in Opposite Directions, (b) Experiencing Poor Health, (c) Receiving Support From Family and Friends, (d) Turning to God for Help, (e) Seeking Relief for Aching Bodies, and (f) Seeking Remedies for Sleeplessness. The current findings may have implications for designing programs that aim to improve the well-being of caregivers.
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.
Rationale& Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support.; Study Design: Descriptive qualitative study using semi-structured interviews and focus groups.; Setting& Participants: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada.; Analytic Approach: Thematic analysis.; Results: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals).; Limitations: Participants were primarily white, educated, married, and English speaking, which limits generalizability.; Conclusions: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
Objective: to evaluate the resilience of people with chronic diseases and their caregivers. Method: this is a quantitative, descriptive and cross-sectional study, conducted with 98 patients and family members, in the participant's residence. Data collection occurred through semi-structured interviews and the Young resilience scale. Descriptive statistics were performed, as well as the chi-square and Fisher's exact test adopting pvalue <0.05 as significant. The results are presented in tables. Results: of the 98 participants, 26.53% are caregivers and 73.47%, patients. The average resilience scale score were 143.90 points (±15.98) and median of 145.00 points, with a minimum score of 53 and a maximum of 171, considering the maximum possible scale score of 175 points. Conclusion: prevalence of caregivers aged less than 60 years, females and with incomplete elementary education. The patients presented higher minimum resilience scale scores, proving to be more resilient than their caregivers.
Design: Validation cross-sectional study. Objectives: Even though caregiver burden (CB) represents a well-recognised concern among caregivers of people with a spinal cord injury (SCI), there are no specific questionnaires designed for its evaluation. This study aimed to assess the psychometric properties of the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), which was modified from its original version, and specifically its construct and reliability. Setting: Multicentre study in four urban spinal units across Italy. The CBI-SCI was administered to family caregivers in outpatient clinics.Methods: CBI-SCI was administered in a toolset composed of a sociodemographic questionnaire, the Family Strain Questionnaire-Short Form (FSQ-SF), the Short Form-36 (SF-36), and the Modified Barthel Index (MBI). The CBI-SCI construct validity was assessed through an exploratory factor analysis. The internal consistency of the questionnaire was examined using Cronbach's alpha (α) coefficient for the total scale and its subscales. Concurrent validity was evaluated performing Pearson's correlation coefficient with all instruments included in the toolset. Results: The CBI-SCI was administered to 176 participants from February 2016 to September 2017. Factor analysis highlighted the five-factored structure of the questionnaire. The total scale Cronbach's α was 0.91 (p < 0.001). All the five subscales of CBI-SCI showed an acceptable internal consistency, ranging from 0.76 to 0.91 (p < 0.001). Pearson's correlation coefficients of the CBI-SCI with all the administered instruments were statistically significant (p < 0.001), showing congruent relations. Conclusion: The CBI-SCI, due to its validity and reliability, may represent a valuable instrument to evaluate the CB longitudinally in SCI.
Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers' lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.
Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable. Main Outcome Measures Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r =.87 for Feelings of Loss-Self and r =.85 for Feelings of Loss-Person with TBI). Conclusions The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI. Highlights • Feelings of loss are common in caregivers of persons with traumatic brain injury. • Two new self-report measures of caregiver feelings of loss were developed. • These self-report measures can help identify feelings of entrapment in caregivers.
Objective To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions Not applicable. Main Outcome Measures The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI. Highlights • The TBI-CareQOL measurement system includes new and existing self-report measures. • Measures were developed specific to caring for someone with traumatic brain injury. • Generic measures also evaluate important quality of life constructs for caregivers.
Objective To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design Cross-sectional survey data collected through an online data capture platform. Setting A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention Not applicable. Main Outcome Measures PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r ≥0.70 except for the fatigue CAT in the SMV sample r =0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI. Highlights • The Patient-Reported Outcomes Measurement Information System (PROMIS) sleep and fatigue measures are both reliable and valid. • The PROMIS sleep and fatigue measures are clinically relevant for caregivers. • Caregivers of persons with brain injury have problems with sleep and fatigue.
Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals). Results: Based on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family. Conclusion: Family members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.
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.
Background. Providing care to patients with low function agility in the home environment becomes a burden and leads to the worsening of the informal caregiver's quality of life. Objectives. Aim of the research was to assess the quality of life of informal caregivers in the context of their burden linked to the care provided to chronically ill patients with low function agility in the home environment. Material and methods. Research was conducted in five public healthcare facilities, from September 2016 until February 2017, and included 138 informal caregivers. The WHOQoL-AGE scale was used to assess caregivers' quality of life, and the COPE Index was employed to assessed caregivers' burden. Results. According to WHOQoL-AGE, the average value of caregivers' quality of life was 70.14 points. Caregivers' burden according to the COPE Index Negative Impact of Care subscale was: M = 11.80; Positive Value of Care subscale: M = 13.71; and in Quality of Support subscale: M = 12.46. Statistical importance was at p ≤ 0.01 for WHOQoL-AGE scale, and the burden according to the COPE Index. Conclusions. Informal caregivers' quality of life according to the WHOQoL-AGE scale corresponds significantly with caregivers' burden according to the COPE-Index, in all of the analysed domains. Along with the increase of the negative influence of the care, general quality of life with all its subscales, as well as satisfaction, decreases. Caregivers' quality of life increases along with the increase of the satisfaction connected to the provided care, and with receiving support from informal and formal healthcare.
Background: Primary caregivers of people with disability provide extensive physically and emotionally demanding care. Objectives: The aim of this study was to quantify the burden of high psychological distress in primary carers of people with disability and identify modifiable factors in relation to high psychological distress. Methods: The 2015 national 'Survey of Disability, Ageing and Carers in Australia' was used to derive a nationally representative sample and estimate weighted prevalence rates of high psychological distress (Kessler scores >=22) in primary carers of people with disability. Risk factors were evaluated using weighted logistic regression models with lasso techniques. Results: Approximately 27% of carers had high psychological distress. Nearly half of the study population reported changes in their health and wellbeing. A delay in general practitioner (GP) visits was common and associated with >2-fold increase in risk of high psychological distress. Discussion: The findings suggest targets for early diagnosis and intervention, and adequate referrals from GPs to meet the health needs of carers.
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.
Objectives To investigate the experiences and views of people living with posterior cortical atrophy (PCA), their family carers and healthcare professionals of vision assessment tests. Design A qualitative investigation using video recordings of vision assessments, semistructured interviews and audio recordings of a focus group. Interviews and focus group used broad, open questions around the topic to prompt and guide discussion. Video and audio recordings were transcribed, manually coded and analysed using framework analysis. Setting University College, London's Queen Square neurology centre provided the venues for all stages of the research. Participants Participants living with PCA were one male and two females (age range 67-78 years). Health professional participants were a neurologist (male), two ophthalmologists (male) and an optometrist (female). Primary and secondary outcomes (1) Experiences and attitudes of people living with PCA and health professionals to vision assessment tests, (2) views of health professionals and people living with PCA of whether some tests are more effective at discriminating between cortical vision problems and vision problems related to optical or ocular causes. Results Patients were able to engage with and complete a number of tests. Their partners played a vital role in the process. Participants reported that simple, short tests were more effective than more subjective tests. Examples of tests that appeared to be more problematic for the patient participants were the Amsler Grid and visual field analysis. Conclusions Although limited in scope and execution, the project suggests that some vision assessment tests are likely to support health professionals to discriminate between cortical and optical/ocular causes of visual impairment. It supports existing evidence that there are vision assessments that people with dementia can engage with and complete. We identify areas of importance for future research and make tentative suggestions for clinical practice.
Purpose: The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted. Design/methodology/approach: This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study. Findings: Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process. Originality/value: Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.
Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Results: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Significance of results: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.
Aims and objectives This study set out to describe caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers’ health‐related quality of life and life satisfaction. Background Knowledge about factors related to caregivers’ health‐related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. Design A cross‐sectional study.MethodsForty‐nine informal caregivers and 49 patients were included. Standardised and study‐specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health‐related quality of life (EuroQol Visual Analogue Scale, SF‐36), life satisfaction (Life Satisfaction Checklist) and caregiver‐ and patient‐related factors. Associations were explored by regression analyses. Results Both positive and negative caregiver experience were reported, and health‐related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health‐related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers’ health‐related quality and life satisfaction. Conclusion The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person‐centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers’ health‐related quality of life and life satisfaction. Relevance to clinical practice Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers’ health.
Background: The impact of total knee arthroplasty (TKA) on patients' informal caregivers (eg, family members, friends) has gone largely ignored. The goals of this study are to measure the impact of TKA on the caregiver and identify factors contributing to higher burden.; Methods: One hundred fifty primary TKA patients and their designated caregivers were prospectively enrolled. The Caregiver Strain Index (CSI) was completed by caregivers preoperatively, at 4 weeks, and at 1 year after surgery. Additional outcomes included the Knee injury and Osteoarthritis Outcome Score for patients only and the Veterans Rand 12 Item Health Survey for both patients and caregivers. Univariate analysis and multivariate regression modeling were performed.; Results: Mean CSI scores at 1 year were significantly lower than preoperative values (P < .01), where lower scores indicate better results. Higher mean CSI values for younger caregivers were identified preoperatively (r = -0.21, P < .01) and at 4 weeks (r = -0.26, P < .01). There were higher mean CSI values for employed caregivers preoperatively (P = .01) and at 4 weeks (P < .01). A negative correlation was identified between CSI and the caregiver's Veterans Rand 12 Item Health Survey Mental Component Score preoperatively (r = -0.15, P = .03) and at 4 weeks (r = -1.5, P = .03).; Conclusion: Caregiver burden nearly doubled in the early postoperative period, which was related to several caregiver and patient factors. However, the burden was close to zero by 1 year postoperatively. Thus, TKA is a beneficial intervention for both patient and caregiver.
Purpose The purpose of this study was to identify predictors of informal caregiver strain and satisfaction associated with caring for veterans with type 2 diabetes (T2DM). Methods This study is a secondary analysis of data from 2 prior studies of caregiving in the Veterans Health Administration. The original studies used a telephone survey to examine veteran and caregiver (CG) characteristics associated with caregivers’ responses to caregiving. The data reported here include 202 veterans with T2DM and 202 caregivers. Linear regression models were generated alternatively using forward and backward selection of veteran and caregiver characteristics. Results Higher caregiver strain was associated with the CG providing activities of daily living assistance, CG receiving less help from friends and relatives and use of unpaid help, CG use of coping strategies, and CG depression scores. Predictors of CG satisfaction included better relationship quality with the veteran and receipt of social support. Conclusions The important role of family and friends in supporting patients with T2DM is widely accepted. Clinicians may engage the caregiver when there is inadequate self-care by the patient. However, less attention has been focused on the effect of caregiving on the caregiver. Greater attention needs to be focused on in-depth exploration of family needs to design and test effective interventions to meet these needs.
The article reports on the number of grants given by the Education Foundation of the Paralyzed Veterans of America (PVA) that will deliver knowledge through person-to-person interactions at conferences and symposia. It outlines the six categories in which education grants can be awarded. It notes that the next Education Foundation grant cycle will be open on September 1, 2018.
Background: Informal caregivers of individuals with Parkinson's disease face a range of responsibilities that increase as the disease progresses. As a result of these stressors, caregivers are vulnerable to decreased health-related quality of life (HRQOL). Guided by the stress process model of caregiving, the present study examined the relations between family cohesion, perceived burden, and mental and physical HRQOL among Parkinson's disease caregivers in Mexico. It was hypothesized that perceived burden would mediate the relations of family cohesion and mental and physical HRQOL.; Methods: Ninety-five family caregivers of individuals with Parkinson's disease in Mexico City, Mexico, participated in the study. Multiple regression was utilized to conduct mediation analyses.; Results: Results indicated that burden fully mediated the relation between family cohesion and mental HRQOL, and family cohesion was not associated with physical HRQOL.; Conclusions: Findings extend the stress process model cross-culturally and lend support for the importance of family cohesion and perceived burden in determining caregiver mental HRQOL. Clinical health promotion interventions should target perceived burden and family cohesion together to improve mental HRQOL among familial caregivers in Mexico.
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.
Objective: to analyze the structure, development and operation of families of elderly patients with liver disease. Method: this is a qualitative-field study, which used the Calgary Family Assessment Model. The study had as its backdrop of research a philanthropic hospital. The study population consisted of five families of elderly hospitalized patients with liver disease. Results: from the five females families evaluated, two were characterized as extensive, one rebuilt, one was composed of brothers without ties of consanguinity and only one as the nuclear family. It was also possible to verify that the relatives presented themselves as the main caregiver, and that all families presented the monthly average of two minimum wages. Conclusion: taking into consideration that the family participation in the process of illness presents itself as a determinant factor for the satisfactory prognosis of patients, the role of nursing before the evaluation and intervention in the family context will contribute significantly to improved health status and wellbeing of patients and their families.
Introduction: Caring for a family member with a long-term illness is a significant source of chronic stress that might significantly accelerate the cognitive ageing of informal caregivers. Nevertheless, the absence of a defined theoretical body of literature on the neuropsychology of this population makes it difficult to understand what the characteristic neuropsychological deficits of these caregivers are.; Aims: The main aim of this study is to carry out a systematic review of studies of cognitive deficits present in informal caregivers of people with several chronic pathologies, and analyse the effects of cognitive-behavioural interventions on caregivers' cognition.; Methods: The scientific literature was reviewed following the PRISMA quality criteria for reviews using the following digital databases: PubMEd, PsycINFO, and Dialnet.; Results: Identification of 2046 abstracts and retrieval of 211 full texts led to the inclusion of 38 papers. The studies showed heterogeneous results, but most of the cross-sectional studies reviewed that employed neuropsychological assessments concluded that informal caregivers reported a generalized cognitive deterioration, especially memory dysfunctions (i.e. learning verbal, visuospatial, and digit information). Moreover, they also presented low selective attention and capacity for inhibition, along with slow processing speed. Longitudinal studies confirmed that caregivers whose care situation was more prolonged showed a marked deterioration in their overall cognitive state, memory, processing speed, and vocabulary richness. However, although the patient's death does not seem to reverse the neuropsychological alterations in caregivers, cognitive-behavioural interventions that employ techniques to reduce stress levels, cognitive biases, and inadequate adaptation schemas seem to improve some of the aforementioned cognitive abilities.; Conclusions: Results from this synthesis and critical analysis of neuropsychological deficits in informal caregivers offer guidelines for diagnosing caregivers' cognitive status by including a test battery covering all the domains considered relevant. Finally, given the ability of cognitive behavioural interventions to improve cognition in caregivers, further studies on their long-term effects on caregivers are warranted. Chronic stress entails an acceleration of the cognitive ageing Cross-sectional studies concluded that informal caregivers reported a generalized cognitive deterioration Cognitive-behavioural interventions seem to improve cognitive abilities of caregivers.
The quality of parent-child relationships would affect adult children’s attitudes and behaviors toward caring for their ill-parents. Perhaps, this is peculiarly true for Chinese societies where the traditional value of filial piety is emphasized. This study aimed to investigate how filial piety might bear on care burden experienced by Chinese family caregivers of people with type 2 diabetes (T2DM) in Hong Kong. Altogether 150 Chinese family caregivers participated in the survey by completing the Caregiver Burden Inventory, Caregiving Difficulty, and Contemporary Filial Piety Scale and answering some demographic questions. The results indicate that family caregivers of people with T2DM experience more difficulty in social caring than in daily caring and physical caring and their burden mainly centers around the time pressure of being preoccupied with the caregiving work. Caregiver burden is indicated positively by caring difficulty and caregiver’s age and negatively by filial piety. It appears, therefore, that nurturing, treasuring this traditional Chinese value may alleviate burden and stress relating to caring for Chinese family members with T2DM. Implications for counselling practice in supporting Chinese family caregivers of diabetic patients - including assessment, intervention, and cultural sensitivity - were put forward.
Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis. Results: PwMS and caregivers averaged 4,091.3 (SD 2,726.3) and 6,160.2 (SD 1,653.0) steps per day, respectively. The mean number of minutes per day of sedentary, light, and moderate to vigorous activity for PwMS was 566.3 (SD 97.7), 167.4 (SD 94.0), and 7.6 (SD 12.4), respectively, and 551.9 (SD 92.4), 199.6 (SD 63.4), and 21.4 (SD 18.2), respectively, for caregivers. Interdependence between dyads for sedentary, light, moderate to vigorous activity, and step count was low and non-significant (rs=0.20, 0.26, 0.13, and –0.27, respectively; p>0.05). Conclusions: Although our findings do not support the interdependence of PA between caregivers and care recipients with MS, they do show that both partners are not engaging in sufficient PA to achieve important health benefits. These findings are important because they indicate that the dyads are likely to benefit from interventions for changing PA behavior.
Objectives Family caregivers face numerous challenges in taking care of their family members with epilepsy. The empowerment of this group of people, who can be described as forgotten patients, should always be considered through supportive interventions; therefore, this study investigated the effect of a family-centered intervention program on stress, anxiety, and depression among family caregivers of patients with epilepsy. Methods In 2017, a trial was conducted in Iran among subjects selected by the convenience sampling method and randomly assigned to two groups: intervention and control. After five sessions per week over a four-week period, the intervention- and control-group data were collected using the Depression Anxiety Stress Scale (DASS) in three stages: before, immediately after, and two months after the intervention. Data were analyzed with Statistical Package for the Social Sciences (SPSS) software using descriptive and analytical statistics, an independent t -test, and repeated measures Analysis of variance (ANOVA). Results In this study, the family caregivers included 61.3% women and 38.7% men, with a mean age of 37.5 years. The findings showed no significant differences in the mean scores of stress (p = 0.93), anxiety (p = 0.91), and depression (p = 0.56) before the interventional program between the intervention and control groups, but these differences were statistically significant in the mean score of stress (p = 0.003) in the immediately after the interventional program, whereas the mean scores of depression were not decreased significantly (p = 0.3). Two months after the interventional program the mean scores of stress (p = 0.001) and anxiety (p = 0.001) were significantly decreased in the intervention group, but the mean score of depression was not decreased significantly (p = 0.09). Conclusion The results suggested that a family-centered intervention program reduced the stress, anxiety, and depression of caregivers because of feasibility, simplicity, and utility of intervention. This program was focused on psychological issues of caregivers, and an emphasis on their empowerment helped them in managing their problems in the caregiving situation and achieved greater psychological potency in the caring process.
Accessible Summary: Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract: Background: People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self‐management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods: Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self‐management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results: Most caregivers had acceptable health literacy, but had low scores on the asthma self‐management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions: Most caregivers had inadequate understanding of asthma self‐management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.
Background: Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim: The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods: A group of elderly recipients of informal care (n = 343) from the general population study ‘Good Aging in Skåne’ (GÅS) Sweden, were divided into five diagnostic groups: dementia (n = 90), heart and lung diseases (n = 48), stroke (n = 62), fractures (n = 66), depression (n = 40) and the group “other”, consisting of different diagnoses (n = 37) according to ICD-10. Differences in burden were analyzed using the Caregiver Burden Scale (CBS), a 22-item scale consisting of five dimensions: general strain, isolation, disappointment, emotional involvement and environmental burden. A total burden index comprises the mean of all the 22 items and a higher score indicates a higher burden. Results: The most common diagnosis associated to caregiving was dementia and fracture and the median hours weekly for informal support with instrumental ADL for the five diagnostic groups ranged from 7 to 45 h for spouses and from 4 to 7 h for parents. The highest proportion of caregivers scoring high total burden was seen among recipients with dementia (50%) and depression (38%); the OR for high total burden for the dementia group was 4.26 (2.29-7.92) and depression group 2.38 (1.08-5.24) adjusted for covariates like age, gender and ADL and these two groups had higher self-perception of burden in all the dimensions, especially the dimension’s emotional burden and strain. Conclusion: Informal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden.
Background Higher patient-caregiver mutuality is associated with improved patient and caregiver outcomes, but no studies have tested the psychometric characteristics of the mutuality scale (MS) in heart failure (HF) patient and caregiver population. Objectives To test the validity and reliability of the MS. Methods A cross-sectional design. The MS validity and reliability were tested with confirmatory factor analysis (CFA) and hypothesis testing, and with Cronbach's alpha and model-based internal consistency index, respectively. Results CFA supported the validity of the MS in the HF patient and caregiver versions. Hypothesis testing showed significant correlations between both versions of the MS and anxiety, depression, quality of life, and self-care. Also, MS caregiver version scores correlated significantly with caregiver preparedness. Cronbach's alphas and the model-based internal consistency index ranged between 0.72 and 0.94 in both versions. Conclusions The Mutuality Scale showed supportive validity and reliability for HF patients and caregivers.
An editorial is presented on the increase importance of family caregivers to improve healthcare outcomes. It highlights the health benefits of caregiving to reduce physical, emotional and financial strains particularly for individuals with chronic illness. It also cites the influence of several factors to the increase caregiver engagement of the nurses including health policy, practice and nursing education.
Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.
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.
The number of people with chronic illness who need home‐based care is increasing globally. Home‐based care is socially constructed to be work carried out by women. However, little attention has been paid to the opini