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Conflict in caring

The following resources examine boundaries, tensions and trade-offs in caring relationships.

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The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity

Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The ‘caregiving bind’ is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition.

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Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development

Background: While clinical pathways have been widely adopted to decrease variation in cancer treatment patterns, they do not always incorporate patient and family caregiver perspectives. We identified shared patient and family caregiver considerations influencing treatment preferences/decision making to inform development of a shared decision pathway. Methods: We conducted qualitative interviews with women who completed initial definitive treatment for stage I–III breast cancer and their family caregivers. As part of a broader interview, we asked participants what they considered when choosing a treatment option for themselves/their loved one. We coded transcribed interviews, analyzed patient and family caregiver datasets separately, and compared findings. Findings Patients' (n = 22) mean age was 55.7 years, whereas family caregivers' (n = 20) mean age was 59.5 years, with most (65%) being patients' spouses/partners. Considerations reported by both groups included cancer status, treatment issues, physical/psychosocial/family consequences, and provider/health care system issues. Data revealed three key tensions that arise during treatment decision making: (1) having enough information to set expectations but not so much as to be overwhelming; (2) balancing the highest likelihood of cure with potential physical/emotional/social/financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. Discussion: Patients and family caregivers identified several considerations of shared relevance reflecting different perspectives. Efforts to balance considerations can produce tensions that may contribute to decision regret if unaddressed. Conclusion: Clinical pathways can increase exposure to decision regret if treatment options are selected without consideration of patients' priorities. A shared decision pathway that incorporates patient-centeredness could facilitate satisfactory decision making. Plain Language Summary: A clinical pathway is a tool used by doctors and nurses to help them plan how they will take care of patients. Clinical pathways do not always include what is important to patients and their families. We spoke with patients with breast cancer and their family members. We wanted to learn what is important to them when they are making decisions about how the patient will be treated for cancer. They reported thinking about the kind of cancer the patient had and about pros and cons of different treatment choices. They also thought about how much is known about different treatment choices. Other patients' stories were important. Patients and family members wanted to know how a treatment would affect their bodies, feelings, normal roles in life, and families. They also thought about their relationship with their doctors and nurses and about how they would pay for their care. It was seen as hard to balance these things when making decisions. Patients and family members wanted to make decisions they would be happy with later. We will use this information to create a new clinical pathway. This tool will help patients with breast cancer, family members, doctors, and nurses work together to make the best decisions about the patient's cancer.

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Consistency in End-of-Life Care Preferences Between Hospitalized Elderly Patients and Their Primary Family Caregivers

Purpose: This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency. Patients and Methods: This cross-sectional correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan. A structural questionnaire about preferences for seven end-of-life medical treatment options involved cardiopulmonary resuscitation, intravenous therapy, nasogastric tube feeding, intensive care unit, blood transfusion, tracheotomy, and hemodialysis. Results: The consistency was 42.28% for preferences of end-of-life medical care between patients and caregivers. The Kappa values for seven life-sustaining medical treatments ranged from 0.001 to 0.155. Logistic regression showed that the predictors of consistency for preferences of treatment were: a patient with a signed living will (odds ratio [OR] = 6.20, p<0.01) and a male family caregiver (OR= 0.23, p<0.01) for cardiopulmonary resuscitation; a patient who visited relatives in the intensive care unit (OR= 2.94, p< 0.05) and a spouse caregiver (OR= 3.07, p< 0.05) for nasogastric tube feeding; a spouse caregiver (OR=3.12, p<0.05) and a caregiver who visited the intensive care unit (OR= 5.50, p<0.01) for tracheotomy; and a spouse caregiver (OR= 2.76, p<0.05) and a caregiver who visited the intensive care unit (OR= 4.42, p<0.05) for hemodialysis. Conclusion: End-of-life medical treatment preferences were inconsistent between patients and family caregivers, which might be influenced by Asian culture, the nature of the relationship and individual experiences. Implementation of advance care planning that respects the patient's autonomy and preferences about end-of-life care is recommended.

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Conflicts Experienced by Caregivers of Older Adults With the Health-Care System

Background: Family caregivers of older adults frequently navigate the health system for their loved ones. As older adults experience more medical issues, the interactions between caregivers and the health system can be fraught with conflicts. Objective: To characterize the conflicts that caregivers of older adults experience with the health-care system. Methods: A cross-sectional national online survey with open-ended questions was conducted among family caregivers ascertaining experiences with the health-care system. Qualitative thematic analysis was completed using constant comparative analysis and review by a third author. Results: Over a 2-month period, 97 caregivers completed the survey. Common themes where caregivers experienced conflicts were Difficulty With Accessing/Communicating With Providers, Delivery of Emergency Care, Disjointed Transitional Care, Unaddressed Clinical Concerns, and Financial. Caregivers reported needing to act as patient advocates in the conflicts with the health-care system. Conclusion: Understanding the conflicts that family caregivers encounter with the health system provides potential targets for future interventions to combat the challenges faced by caregivers of older adults and ultimately improve delivery of geriatric care.

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The Relationship of Caregiving to Work Conflict and Supervisor Disclosure With Emotional, Physical, and Financial Strain in Employed Family Caregivers

Objective: To determine whether employed family caregiver reports of caregiving to work conflict (CWC) are associated with emotional, physical, and financial strain, and whether organizational factors, including supervisor disclosure and caregiver-friendly workplace policies, attenuate these effects. Method: We examined 369 full-time employed caregivers of adults aged 50 years and above from the 2015 AARP and National Alliance for Caregiving population-based study, Caregiving in the United States, using ordinary least squares hierarchical regression and moderation analyses. Results: Regression analyses showed that caregiver reports of more CWC, in addition to disclosure of caregiving, were associated with greater emotional, physical, and financial strain after controlling for demographics and caregiving stressors, and workplace policies did not attenuate strain. Neither disclosure nor policies moderated the impact of CWC on caregiver strain. Discussion: Results suggest the importance of workplace strain in the caregiving stress process and suggest that disclosing caregiving responsibilities to supervisors should be closely examined.

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The Predicament of Caring: Work Interferences and Health of Family Caregivers of Persons With Multiple Chronic Conditions

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.

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Hematological cancer patient‐caregiver dyadic communication: A longitudinal examination of cancer communication concordance

Objective: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient‐caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics. Methods: A case series of hematological cancer patient‐caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT‐PF) and the association with participant characteristics. Results: White patient‐caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship. Conclusions: Patient‐caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making. 

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Experiences of being a former young carer: effects in the transition into adulthood and in the present life situation

This qualitative study aims to describe the experiences of adults with caring responsibilities during their childhood. 16 semi-structured interviews with former young carers were conducted and analyzed using open and axial coding procedures and constant comparison techniques. Being responsible as a child in terms of caregiving has an impact on every person concerned. When entering adulthood, most former young carers maintain the responsibility for the ill person. They feel torn between the effort of trying to arrange their life in a different way and holding on to a life where responsibility is still a dominant concern. They remain silent about caregiving due to the fear of painful memories, or the inability to recognize themselves as former young carers. Knowledge of former young carers’ situation can improve the understanding of how caring shapes the transition into adulthood and can help to prevent an inappropriate caring role of actual caregiving children.

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Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

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Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest–posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p =.008 and p <.001, respectively), knowledge of ACP (both p <.001), and significant reductions in decisional conflicts (both p <.001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p =.001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care. 

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Making Decisions About Long-Term Institutional Care Placement Among People With Dementia and Their Caregivers: Systematic Review of Qualitative Studies

BACKGROUND AND OBJECTIVES: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. RESEARCH DESIGN AND METHODS: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. RESULTS: We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). DISCUSSION AND IMPLICATIONS: People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings. 

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A causal model of caregiving burden among dementia caregivers

In this study, a cross-sectional, predictive correlation design was used to identify and test a causal relationship between behavior disturbances, coping, family conflict, self-esteem and social support to caregiver burden among dementia caregivers. A total of 450 caregivers of dementia aged over 18 years were recruited from 4 hospitals in northern Thailand based on selected criteria. Demographic Questionnaire, Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD, The Family Conflict Scale, The Zarit Burden Interview Scale, The Perceived Social Support Questionnaire, The Brief COPE and The Rosenberg Self-Esteem with acceptable reliability coefficients were used to collect data. Data were analyzed using descriptive statistics, Pearson’s Product-Moment Correlation and path analysis by structural equation modeling. Results showed that the modified model fitted with the data and explained 58 % of the variance in caregiving burden among dementia caregivers. Coping and family conflict had a positive direct effect on caregiving burden (p < 0.001), whereas self-esteem and social support had a direct negative effect on caregiving burden (p < 0.001). Behavior disturbance had a positive indirect effect caregiving burden (p < 0.001) via family conflict. Coping had a positive indirect effect on caregiving burden (p < 0.001) via behavior disturbance and family conflict. Social support had a negative indirect effect on caregiving burden (p < 0.001) via family conflict and self-esteem. The results of this study could be used as a guideline for psychiatric nurses in planning an appropriate intervention program to reduce burden of caregivers of dementia patients in Thailand. 

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Care and the shadow of the fourth age: how does home care get caught up in it and how does it stay away from it?

This article examines how care encounters at the elders' homes are forged, and how the way these encounters are forged avoids or evokes the social imaginary of the fourth age. Data were gathered in Portugal from elders receiving home care (16 cases), their care workers (eight cases) and family carers (six cases), through participant observation and informal conversations (conducted at the elders' homes), as well as focus groups. The collected data were analysed according to the procedures of Framework Analysis. This study found five forms of care encounters - marked by conflict, infantilisation, burden, harmony and indifference - the harmony form being the only one found to maintain the fourth age at a distance. It concludes that home care has a Janus-like nature in relation to the fourth age, and that the way home care encounters are forged depends on the conditions of the care settings and the actions of all participants in care encounters. It also concludes that it is difficult to maintain the social imaginary of the fourth age at a distance when the elders exhibit high levels of infirmity. Finally, it concludes that family carers play a crucial role in the way care encounters unfold. Implications for practice and policy include vocational training regarding the relational component of care, and information and educational programmes for family carers.

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I’ll Be a Caregiver-Employee: Aging of the Workforce and Family-to-Work Conflicts

Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI). In this study, we analyzed the CE phenomenon in a typical Italian public company, where the mean age of workers is particularly high. Methods: An online questionnaire related to the perception of HWI, well-being, and discomfort at work (depression, emotional exhaustion, job engagement) in relation to the family load (none, parents with <12 children to care for, caregiver to other adults, or children and older adults to care for/old/children to care for employees) was answered by 1704 administrative workers. Results: More than 20% of our sample was included in the elder caregiver condition or in the double role or “sandwiched” condition with older adults and children to care for. The family load changed significantly between the different age groups: for workers aged between 55 and 64 years, the percentage was nearly 27%. CEs had higher levels of HWI and of personal and job discomfort and lower levels of engagement, when compared with non-CEs. Having “only” older adults to care for (the typical CE condition) was associated with having the most negative results. Conclusion: This study confirms and underlines the increasing number of CEs in western organizations and their higher levels of HWI, work disengagement, emotional exhaustion, and depression. As the general population and workforce experience increased “graying,” and many more workers become CEs out of necessity, stable caregiver-friendly workplace policies (CFWPs) should be developed. 

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Primary Caregivers in a Network Context

Objectives Caregiving to individuals affected by Alzheimer's disease and related dementia (ADRD) is a family-systems process where tasks are distributed between multiple caregivers in a network. We evaluate the extent to which multiple network members nominate one another as filling primary caregiver (PCG) roles and factors associated with nomination. Method Data come from the Caregiving Roles and Expectations Networks project, which aimed to characterize the caregiving networks of families affected by ADRD. All persons affected by ADRD were either full-time residents in residential care facilities or community-dwelling adult day-care participants. Generalized Poisson regression was used to model the count of incoming PCG nominations of each network member. Results On average, there were multiple network members identified as PCGs across different network contexts. Network members who were perceived to perform essential caregiving tasks, such as making decisions on behalf of and spending time with the care recipient, received more primary caregiving nominations from their network peers, adjusting for personal attributes, and the context of care. Discussion Having multiple PCGs in a network may result in lack of consensus in who fills those roles, potentially putting families at risk for interpersonal conflicts. Future work aimed at intervention development should fully assess the social contexts surrounding caregiving processes in order to better understand how network composition might impact outcomes.

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Interpersonal relationship challenges among stroke survivors and family caregivers

A strong interpersonal relationship after stroke is important for the well-being of survivors and family caregivers. However, as many as 54% of families experience relationship problems after stroke and as many as 38% of couples experience overt conflict. The purpose of this study is to enhance understanding about relationship challenges among stroke dyads and to identify implications for direct practice in social work. Semi-structured interviews were conducted with N = 19 care dyads. Qualitative data were analyzed through an interpretive description lens. Seven themes about relationship challenges were identified. Findings highlight areas to consider in promoting strong relationships between survivors and family caregivers. Social workers may have the opportunity to assist dyads with disrupting negative communication cycles, strengthening empathy and collaboration, and achieving a balance so that each person's needs are met.

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The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers

The study evaluated how changes in the status of women in the Israeli Arab sector are perceived in light of the role of women as main caregivers of older adults. Interviews with 25 older adults and 27 family members were conducted. Qualitative analysis consisted of constant comparisons and contrasts of relevant themes. Two main themes emerged from the interviews. The first theme was the expected and actual role of women. The immediate response of most interviewees was the expectation that women are responsible for housework in their own home and in that of their aging parents. The second theme was the changes in the woman’s status in the Arab society. Most respondents noted that women today are very busy, and they sometimes work outside the home. In other words, the themes reflect the conflict between tradition and the rules that were followed in the past, and the changes that have appeared in recent years.

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The Arabic and Hebrew versions of the caregiving ambivalence scale (CAS): examining its reliability, validity, and correlates among Israeli caregivers of individuals with Alzheimer's disease

Objectives: Providing care for family members with Alzheimer's disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers' ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings. Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28). Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique - although modest - contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers. Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.

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Trust in older persons: A quantitative analysis of alignment in triads of older persons, informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers' trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers' trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person. 

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The influence of individualistic and collectivistic morality on dementia care choices

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

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"In the Bengali Vocabulary, There Is No Such Word as Care Home": Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

Background and Objectives: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.; Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed.; Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks.; Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

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Caregiving time costs and trade-offs: Gender differences in Sweden, the UK, and Canada

Population ageing is putting pressure on pension systems and health care services, creating an imperative to extend working lives. At the same time, policy makers throughout Europe and North America are trying to expand the use of home care over institutional services. Thus, the number of people combining caregiving responsibilities with paid work is growing. We investigate the conflicts that arise from this by exploring the time costs of unpaid care and how caregiving time is traded off against time in paid work and leisure in three distinct policy contexts. We analyze how these tradeoffs differ for men and women (age 50-74), using time diary data from Sweden, the UK and Canada from 2000 to 2015. Results show that women provide more unpaid care in each country, but the impact of unpaid care on labor supply is similar for male and female caregivers. Caregivers in the UK and Canada, particularly those involved in intensive caregiving, reduce paid work in order to provide unpaid care. Caregivers in Sweden do not trade off time in paid work with time in caregiving, but they have less leisure time. Our findings support the idea that the more extensive social infrastructure for caring in Sweden may diminish the labor market effects of unpaid care, but highlight that throughout contexts, intensive caregivers make important labor and leisure tradeoffs. Respite care and financial support policies are important for caregivers who are decreasing labor and leisure time to provide unpaid care.

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Employment adjustment and mental health of employed family caregivers in Canada

Family caregivers make employment adjustment to fulfill caregiving responsibility. However, the studies on the family caregivers' mental health outcomes associated with their employment adjustment are limited. This study utilized the role theory and stress process model of caregiving to examine the relationship between employment adjustment and mental health outcomes among family caregivers, and to test family-to-work role conflict as a mediator and workplace support as a moderator in this relationship. Data (n = 1,696) were drawn from the 2012 Canada General Social Survey: Caregiving and Care Receiving. Findings suggest that employment adjustment is significantly associated with negative mental health outcomes including worse self-rated mental health and higher life stress level. In addition, family-to-work role conflict mediates between employment adjustment and mental health outcomes, with the mediating effect as significant at all levels of workplace support and as weak with increasing workplace support. The findings highlight the role of family-to-work role conflict in understanding the influence of employment adjustment on family caregiver's mental health, and the implication of workplace support on promoting caregiver-friendly workplace culture to alleviate family-to-work role conflict thereby resulting in better mental health outcomes.

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

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

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

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

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Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families. 

  • Explores care practices and aspirations of siblings of people with ID/ASD.
  • Reveals how moral emotions of guilt, anger and self-compassion shape the moral identities of carers.
  • Argues that looking at care from the perspective of emotions can inform supports for carers. 
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Family Caregiving Situations and Engagement in Advance Care Planning

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

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Reciprocity, Autonomy, and Vulnerability in Men's Experiences of Informal Cancer Care

Men are increasingly participating, and acknowledging their roles, as informal . Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring. Our analysis highlights a series of tensions, including the following: the meanings and practicalities of care provision including notions of reciprocity, duty, autonomy, and interdependence; the discomforts of dependency and vulnerability; and the complicated moralities that inflect "caring well." Given the shifting dynamics around informal care, we argue for increased attention to the affective tensions that arise at the nexus of moralities and masculinities in informal caring relations, especially as they are articulated in the context of illness, affliction, and dependency.

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The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

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. 

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Carers of people from LGBTQ communities interactions with mental health service providers: Conflict and safety

This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.

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Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia

Objectives: To examine the stress-buffering effect of coping strategies on the adverse effects of interrole conflict on the mental health of employed family caregivers, and clarify the moderating role of attentional control on this stress-buffering effect. Methods: Data were drawn from a two-wave longitudinal online survey of employed Japanese family caregivers of people with dementia (263 males, 116 females; age 51.54 ± 9.07 years). We assessed interrole conflict, coping strategies, attentional control, mental health variables (psychological strain and quality of life), and confounding factors. Results: Hierarchical regression analyses controlled for sociodemographic factors found formal support seeking had a stress-buffering effect for strain- and behavior-based caregiving interfering with work (CIW) only on psychological strain, and was moderated by attentional control. Single slope analysis showed higher CIW was related to higher psychological strain in those with greater use of formal support seeking and lower attentional control, but not in those with higher attentional control. Conclusions: Greater use of formal support seeking weakens the adverse effects of strain- and behavior-based CIW on psychological strain in people with high attentional control. Clinical Implications: Attentional control is a key factor in the stress-buffering effect of formal support seeking on strain- and behavior-based CIW. 

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

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

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A Qualitative Study on Cancer Care Burden: Experiences of Iranian Family Caregivers

The aim of this study was to explore the experiences of Iranian family caregivers with regard to the burden of caregiving. This is in the context of illuminating and identifying the experiences of family members from different contextual perspectives. In this qualitative study, purposive sampling was conducted in 2016. Data were collected using semistructured interviews and were analyzed using content analysis. Data analysis identified 4 categories and 8 subcategories: (1) burnout (physical problems and psychoemotional stress), (2) role conflict (balancing caring roles and family responsibilities; failure in professional or educational roles), (3) health system tensions (inadequate support from health professionals; ignorance of family members in health structure), and (4) social challenges of cancer (economic burden; taboo of cancer). In conclusion, nurses need to provide individualized support and counseling that address the sources of burden. This highlights the benefit of training health care professionals to provide culturally sensitive support based on family caregivers' needs and circumstances.

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

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

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'It all depends!': A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.; Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.; Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.; Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.; Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.; Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

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Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

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Older Caregivers and Guardianship: A Primer

Older caregivers may be unfamiliar with guardianship, and may not know if it could help or hinder their caregiving. This article explores questions that professionals who are counseling older caregivers should ask, including whether guardianship is needed or if there is a less restrictive option; whether the caregiver should petition and what to expect of the court proceeding; whether the caregiver should take on the legal responsibility of serving as guardian; and what happens in case of family conflict, abuse by a guardian, or inability of a guardian to continue serving.

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Caregiving When There Is Family Conflict and Estrangement

Family conflict and estrangement can complicate caregiving tasks later in life. Research suggests that adult children who are estranged do not visit their parents when their parents are sick, despite societal pressures to reconcile and take care of them. Parents also report feeling surprised that their estranged children did not return home when they were in need, which ultimately solidified the estrangement. This article offers a broad discussion of the existing research on family conflict and caregiving, then focuses more specifically on family estrangement. 

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Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers. Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms. Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners' ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up. Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress. Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.

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Adaptation and resilience in families of individuals with Down syndrome living in Ireland

Accessible Summary: This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. We found that good family communication and family hardiness have a positive affect on how families adapt. Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Abstract: Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status. The incidence of Down syndrome in Ireland is estimated to be 1 in 546, with approximately 7,000 people with Down syndrome living in Ireland. While some families of individuals with Down syndrome may find it difficult to adapt, other families adapt successfully and some even thrive. The aim of this study, which is guided by the Resiliency Model of Stress, Adjustment and Adaptation was to examine linkages between family demands, family appraisal, family resources, family problem‐solving communication and family adaptation in families of individuals with Down syndrome living in Ireland. Methods: Ninety‐five parents (79 mothers, 16 fathers) of children with Down syndrome aged between 1 and 30 years completed six self‐report measures designed to assess key dimensions of the Resiliency Model of Family Stress, Adjustment and Adaptation. Results: This study found that families of children with Down syndrome can adapt and become resilient. Factors found to positively influence this process include family hardiness and affirming family communication. Factors that negatively influenced this process were incendiary family communication and view of the condition impact. Conclusion: Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Early recognition of the difficulties being experienced by families and the provision of interventions that target and foster positive resiliency traits such as affirmative communication and the development of overall family hardiness are key to adaptation.

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

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

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Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: a qualitative study

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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

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

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Caregiving as mobility constraint and opportunity: married daughters providing end of life care in northern Ghana

In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities. This article contributes to geographies of care by offering an examination of the mobility constraints experienced by married and externally-resident daughters seeking to provide end of life care to a parent in northern Ghana. Drawing on ethnographic research, I examine how particular familial relationships are embedded with socially constructed labour obligations, leading to conflicting responsibilities at a parent’s end of life. I then consider how a woman as a daughter works to overcome these constraints to provide end of life care. I conclude that understanding the mobility of care providers can contribute to avoiding potentially damaging assumptions of ‘traditional’ norms of care and is an important consideration towards understanding the geographies of care in the rural global south.

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Prevalence and predictors of conflict in the families of patients with advanced cancer: A nationwide survey of bereaved family members

Objectives Family conflict has several adverse impacts on caregivers. Thus, there is significant value in determining the prevalence and predictors of family conflict, which can enable the health care provider to intervene if family conflict arises during end-of-life care. Accordingly, we aimed to explore the prevalence and predictors of conflict among the families of patients with advanced cancer who died in palliative care units. Methods This study was a nationwide multicenter questionnaire survey of bereaved family members of cancer patients who died in Japanese palliative care units participating in evaluation of the quality of end-of-life care. Results We sent out 764 questionnaires, and 529 questionnaires (69.2%) were returned. As 70 family members refused to participate and we could not identify the answers in one questionnaire, we analyzed a total of 458 responses. The average Outcome-Family Conflict score was 13.5 ± 4.9 (maximum score: 39.5), and 42.2% of family members reported at least one family conflict during end-of-life care. Greater family conflict was significantly associated with younger family age, with family members asserting control over decision making for patient care and with communication constraints among family members, although absent family members "coming out of the woodwork" reduced family conflict. Conclusions Many families of patients with advanced cancer experienced conflict during end-of-life care. Family members asserting control over decision making and communication constraints among family members after diagnosis of cancer can predict the occurrence of family conflict. Absent family members "coming out of the woodwork" might reduce family conflict in particular cultures.

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Challenges in intergenerational caregiving for frail older people: A multiple case study

Families in Taiwan are considered central in caring for frail older people. However, rapid social changes are reshaping Taiwanese family values and structures. In this study, we explored the challenges of intergenerational families in caring for frail older people in Taiwan. Using a multiple-case study, 32 participants representing 12 families comprising three or more generations participated in individual, semistructured interviews. A grounded theory technique was used for the data analysis. Four themes emerged in the findings: intergenerational and intragenerational disharmony, restrictions in the physical environment, financial caregiving burdens, and lack of support from the healthcare system. The findings can help raise awareness of filial caregiving obligations of aging family members that have shifted from a parent-child dyad to being shared across multiple generations in Taiwan. Intergenerational caregiving for frail older people has become a challenge for policies aimed at keeping the aging population in the community.

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Dyadic effects of gratitude on burden, conflict, and contribution in the family caregiver and sibling relationship

Family caregivers are a quickly growing population in American society and are potentially vulnerable to a number of risks to well-being. High stress and little support can combine to cause difficulties in health and personal relationships. Siblings are, however, a possible source of protection for the at-risk caregiver. This study examines the relationships between caregiver burden, relational conflict, individual contribution, and gratitude exchange between caregivers and their siblings as they attend to the issue of caring for aging parents. Dyadic data were collected through an online survey and were analyzed using a series of actor–partner interdependence models. Dimensions of gratitude related to reduced caregiver burden, improved care-related conflict, and promotion of greater contribution to caregiving.

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Me and You in Caregivinghood - Dyadic resistance resources and deficits out of the informal caregiver's perspective

Objective: To present Specific and Generalized Resistance Resources (SRRs/GRRs) and Deficits (SRDs/GRDs) described by 32 informal caregivers as originating from themselves and their older adult carerecipients as dyads.; Method: Salutogenic interviewing was used to assemble data from caregivers. A theory-driven, memo-guided and comparative analysis using within- and across- case analysis was applied to unravel resources and deficits influencing the outcomes when they managed tension associated with caregiving.; Findings: Living in fellowship in a well-functioning dyad unites the essence of having access to dyadic SRRs/GRRs. Such access enables dyads to use their specific dyadic tension management to resolve challenges through cooperation, derives 'positive' life-experiences and preserves dyad functioning. Struggling alone in a malfunctioning dyad indicates the presence of dyadic SRDs/GRDs counteracting such a development. If these SRDs/GRDs accumulate, the dyad become less able to resolve challenges, 'negative' life-experiences accumulates, the carerecipient's capability to cooperate decreases, caregiver's workload increases, the dyad becomes increasingly malfunctioning and moves towards the point where caregiving ends due to lack of usable SRRs/GRRs.; Conclusions: Findings reveals the complex duality of caregiving and the necessity to assess all available SRRs/GRRs and SRDs/GRDs for caregiving dyads, including out of the carerecipient's perspective. Appropriate 'salutogenic' support reduces SRDs/GRDs, makes available SRRs/GRRs usable or provides alternative SRRs/GRRs, thereby dyadic tension management and dyadic functionality is preserved during this phase of life labelled Caregivinghood. The study adds new knowledge to the salutogenic framework regarding central, theoretical concepts and suggests how data for health promoting initiatives conducted the 'salutogenic way' may be acquired.

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Contextual Challenges and the Mosaic of Support: Understanding the Vulnerabilities of Low-Income Informal Caregivers of Dependent Elders in Singapore

Informal caregivers play an increasingly important and demanding role in providing and ensuring long-term care for elders. To date, few studies have qualitatively explored the challenges and coping strategies adopted by informal caregivers of dependent elders from lower-income households in Singapore. Based on data from in-depth interviews with 19 respondents, this study provides detailed and nuanced accounts of the lived experiences of low-income informal caregivers. The strains associated with the scarcity of resources among low-income caregivers are compounded by contextual challenges such as fractured familial relationships, role conflicts, and perceived barriers in their institutional environment. To overcome these challenges, low-income caregivers resort to a mix of informal and formal sources of support. Suggested improvements for policies and service provision to address the vulnerabilities of low-income caregivers will also be discussed in light of current gaps.

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The challenges of shared decision making in dementia care networks

Background: Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.; Methods: A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.; Results: The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.; Conclusion: The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

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"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions

Background: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used.; Objectives: To report on seniors' and caregivers' experiences of housing decisions.; Design: A cross-sectional study with a quantitative approach supplemented by qualitative data.; Setting: Sixteen health jurisdictions providing home care services, Quebec province, Canada.; Participants: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing.; Measurements: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants' narratives about their decision-making experiences and made other observations in standardized logbooks.; Results: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors' health and safety concerns and caregivers' burden of care. Some caregivers felt sad and guilty when the decision did not match the senior's preference.; Conclusion: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.

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Informal caregiving, work-privacy conflict and burnout among health professionals in Switzerland - a cross-sectional study

Introduction: Health professionals were found to have an elevated burnout risk compared to the general population. Some studies also reported more emotional exhaustion - a component of burnout - for health professionals with informal caregiving responsibilities for children (double-duty child caregivers) or adults (double-duty adult caregivers) or a combination of both (triple-duty caregivers) compared to health professionals without informal caregiving roles (formal caregivers). However, the potential mediating effect of the work-privacy conflict in this relationship as well as differences between occupational groups have not yet been studied in healthcare settings.; Aim: To assess the impact of informal caregiving on burnout risk among health professionals and whether this relationship is mediated by work-privacy conflict or differs between occupational groups.; Methods: Data were collected through an employee survey in six hospitals from German-speaking Switzerland in 2015/2016. Mediation analyses were performed using linear mixed models with fixed effects for caregiving situation and work-privacy conflict as well as random effects for hospitals.; Results: Triple-duty caregivers were found to have a significantly higher burnout risk compared to formal caregivers only. Work-privacy conflict did not mediate this relationship, except among the "other health professionals" group.; Conclusion: Additional and large-scale studies focusing on the combination of formal and informal caregiving roles are needed to better understand its effect on burnout among healthcare professionals and to evaluate the role of work-privacy conflict.;

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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Objective: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.; Design: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.; Setting: Community settings and nursing homes in the Netherlands.; Participants: 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).; Results: The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.; Conclusion: Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

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Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners

Purpose: To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods: In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver's care-related preferences, the person with dementia's care-related preferences, and the caregiver's perception of the person with dementia's preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results: Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications: Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia's well-being. 

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Findings from an online survey of family carer experience of the management of challenging behaviour in people with intellectual disabilities, with a focus on the use of psychotropic medication

Accessible summary: Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families.

Abstract: Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice. 

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A dyadic analysis of stress processes in Latinas with breast cancer and their family caregivers

Objective: Breast cancer diagnosis and treatment negatively affect quality of life for survivors and their family caregivers. The stress process model has been useful for describing the cascade of social and psychological experiences that culminate in degraded quality of life for both survivors and their family caregivers. This study is designed to test theoretically specified predictors of negative psychosocial outcomes in a dyadic context. Methods: Participants were 230 dyads composed of Latinas recently diagnosed with breast cancer and their primary family caregiver, who completed measures of socioeconomic status, stress, family conflict, depression, and anxiety. Data were analyzed following the Actor-Partner Interdependence Mediation Model in structural equation modeling. Results: For both survivors and caregivers, there were significant direct and indirect actor effects (through family conflict) of perceived stress on depression and anxiety. Several indirect partner effects were also evident in this sample. Specifically, caregivers' stress was predictive of survivors' depression and anxiety through survivors' increased perceptions of family conflict. Conclusions: As predicted by the stress process model, stress and family conflict were predictive of psychological distress in breast cancer survivors and their family caregivers. Significant partner effects in the Actor-Partner Interdependence Mediation Model suggest that there are some dyadic influences, particularly from caregivers' stress to survivors' perceptions of exacerbated family conflict. These findings show how strained family relationships can aggravate the well-being of cancer survivors and their family caregivers through this challenging experience. 

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The role of family carers in the use of personal budgets by people with mental health problems

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems. 

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Discussion Paper 8: Difficult Relationships and Family Caring

This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.

Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts.  Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.

However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?

This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:

  • Caring for a family member (generally a parent) who abused or neglected them in childhood
  • Caring for a spouse/partner where the relationship had significant difficulties prior to the care situation arising
  • Conflict in family/sibling relationships where one party provides significant care and others do not.
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Discussion Paper 7: Romancing the Carer - Intimate Relationships and Family Caring

This is the seventh paper in the Care Alliance Ireland Discussion Paper Series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion  within the wider community of academics, not-for-profit organisations and other interested parties. 

The relative unavailability of studies specifically addressing the issue of the impact on intimate relationships of Family Carers is worth noting. The majority of studies that have been undertaken often focus exclusively on the impacts of the disability on the relationship, rather than the impact of caring on the partner/spouse providing care, or on the partner/spouse of a Family Carer. Consequently, this paper is exploratory in nature, and is based on discussions with professionals and Family Carers. Where reference material is available, it has been included; however, material was not available for all topics under discussion in this paper.

The inspiration for the paper has been drawn from conversations with some of our member organisations and a number of Family Carers. These Family Carers have indicated that while this topic may not be of relevance to all Family Carers, it is a topic which those supporting carers must be aware of, and not be afraid to address if necessary.

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Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults

Objectives: To examine caregiver factors associated with unmet needs for care of older adults.; Design: Population-based surveys of caregivers and older adult care recipients in the United States in 2011.; Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving.; Participants: Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366).; Measurements: Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects.; Results: Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P < .001).; Conclusion: Unmet ADL needs are prevalent among older adults with family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them.; © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

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Carer involvement in compulsory out-patient psychiatric care in England

Background: There is an expectation in current heath care policy that family carers are involved in service delivery. This is also the case with compulsory outpatient mental health care, Community Treatment Orders (CTOs) that were introduced in England in 2008. No study has systematically investigated family involvement through the CTO process.; Method: We conducted qualitative interviews with 24 family carers to ascertain their views and experiences of involvement in CTOs. The transcripts were subjected to thematic analysis that incorporated both deductive and inductive elements.; Results: We found significant variation in both the type and extent of family carer involvement throughout the CTO process (initiation, recall to hospital, renewal, tribunal hearings, discharge). Some were satisfied with their level of involvement while others felt (at least partly) excluded or that they wanted to be more involved. Some wanted less involvement than what they had. From the interviews we identified key factors shaping carers' involvement. These included: perceptions of patient preference; concern over the relationship to the patient; carers' knowledge of the CTO and of the potential for carer involvement; access to and relationships with health professionals; issues of patient confidentiality; opportunities for private discussions, and; health professionals limiting involvement. These factors show that health professionals have many opportunities to facilitate, or hinder, carer involvement. The various roles attributed to carers, such 'proxy' for patient decision, 'gatekeeper' to services, 'mother' or 'expert carer', however, conflict with one another and make the overall role unclear.; Conclusions: There is a need for clarification of the expectations of carers in individual care situations, for carers to be equipped with the information they need to in order to be involved, and for services to find flexible and innovative ways of ensuring continuous, open communication. The introduction of CTOs in England has not been successful in its ambition for carer involvement.

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Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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Long-term care in Spain: Difficulties in professionalizing services

The aim of this article is to analyze the difficulties in professionalizing the long-term care system in Spain. Since 2006, the new Spanish law has recognized care as a subjective right, and regulations are being designed to create a framework for its professionalization. Nowadays, family remains the most important group of providers who care for their elders, and women remain the main informal caregivers. Why do families resist using public long-term care services and professional carers included in the new law? The hypothesis highlights sociocultural factors as an obstacle to professionalization of long-term care services in addition to political and economic factors. The results show qualitative data about expectations, preferences, and discourses that women caregivers have in relation to their responsibility. The empirical material includes 25 interviews with different profiles of caregivers and six focus groups with family caregivers. The article suggests that the Spanish ideal of care is a problem for the professionalization of services because the family remains as the main provider of care—without specific skills, knowledge, and abilities. 

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Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study

This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.

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Family Caregivers' Reflections on Experiences of Assisted Suicide in Switzerland: A Qualitative Interview Study.

Context:Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Results: Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Conclusion: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs.

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'Habitus and Bureaucratic Routines', cultural and structural factors in the experience of informal care - A qualitative study of Bangladeshi women living in London

This article draws on Bourdieu's notion of habitus to address the interaction between cultural and structural factors in influencing the experience of informal care among Bangladeshi women in London. The authors present a secondary analysis of a qualitative study focusing on the accounts of informal care. The data were drawn from a two-year study with Bangladeshi women aged 35—55. Thirty-two out of the 100 women in the original study were providing care, mostly in isolated circumstances and with little or no formal support. The authors analysed the accounts of these 32 women and in the context of high levels of suffering and distress, three key themes emerged: amplification of suffering, dispositions of duty and religion and entitlements and fields of struggle. The gaps in access to formal support faced by these women suggest that strong cultural and structural forces determined their experience of informal care and the meanings they attached to their role as informal carers. Drawing on the work of Bourdieu and others, the authors suggest that where there is a lack of agency and resistance to support services, the explanation needs to move beyond poor information and language issues to a more rounded understanding of relationship between habitus and conflicts over local fields of welfare.

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Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Results: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.

Conclusions: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.

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Finding a wider horizon: Experiences of being a next-of-kin of a person suffering from colorectal cancer as told after having participated in a psychoeducational program

Aim: The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kin's life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP.

Methods: The study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis.

Results: Based on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care.

Conclusion: The findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kin's situation and experience from participating in a PEP.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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Do different stakeholder groups share mental health research priorities? A four-arm Delphi study

BACKGROUND: Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research.

OBJECTIVE: To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them.

DESIGN: Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds.

SETTING AND PARTICIPANTS: The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23).

FINDINGS: There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self-esteem and recovery. The quality of in-patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board.

CONCLUSIONS: The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.

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Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.

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Carers of people with learning disabilities, and their experience of the 1995 Carers Act

This paper seeks to highlight the impact of the Carers (Recognition and Services) Act of 1995 on carers of people with learning disabilities. It draws on research conducted in the south west between 1997 and 1999, which examined the views and experiences of carers who had an assessment of their needs, together with those of the person they care for and the professional conducting the assessment. It concludes that the Carers Act is not widely used, or understood, by this group of carers. Recommendations for improving practice include changes to the current terminology, new triggers for a carer's needs assessment, and a greater input from other agencies, especially health services. Although the current paper focuses on the views and experiences of carers, an exploration of the Carers Act, and its effect on potential conflicts of interest with the person with learning disabilities, is available elsewhere (Williams and Robinson, 2001).

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Drawing the line: the boundaries of volunteering in the community care of older people

Volunteers can play important roles in the provision of support and care to frail or confused older people living in their own homes. There are conflicting expectations as to what these roles should be since there are unclear boundaries with those of paid care and with informal care. The present article explores some of these boundaries, drawing on material from a study of 14 volunteer schemes in England. The aim of the research was to explore the roles played by volunteers in the overall care division of labour. The main method used was that of semistructured interviews with organizers and volunteer coordinators of the schemes involved. The findings presented here relate to the limitations on the type of cases taken on, and to the boundaries with professional care, paid manual work and informal care. It concludes that the ways in which these boundaries are established and maintained depends not only on legal and policy constraints at the level of the state, but also on negotiation between organizations and individuals at a local level. The issues raised are of importance not only to research in the area, but to anyone planning similar schemes in the future.

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To Live Close to a Person With Cancer - Experiences of Family Caregivers

The purpose of this study was to obtain a deeper understanding of the experiences of Family Caregivers (FC) living close to a patient with cancer. This article reports on the findings from individual interviews with 15 FCs of patients with cancer. The interview transcripts were analyzed using qualitative hermeneutic analysis. This study revealed that living close to a cancer patient over the course of his or her illness affected many aspects of FCs lives in significant ways. Their experiences can be summarized with two major themes: (1) living in an ever changing life world and (2) balancing between conflicting interests and dilemmas. This study contributed to deeper insights into FC's experiences than previously reported in the literature.

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A participatory action research project evaluating a carers' representation group : Carers Against Stigma

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.

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Young Carers: Mature Before Their Time

The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.

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Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.

Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.

Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.

Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.

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Shadow Times: The Temporal and Spatial Frameworks and Experiences of Caring and Working

In this article we explore temporal and spatial frameworks for analysing the experience of combining caring for children with participation in paid work. We highlight the pressure to undertake paid employment routinely, which places particular strains upon people who are most likely to have to combine caring and working. The authors assert that mothers continue to have the main responsibility for the organization, if not the conduct, of caring work (Sevenhuijsen, 1998). Traditional assumptions about the seeming relationship between femininity and caring remain relatively intact, despite major shifts in family formation, women’s participation in the labour market and debates about the changing role of men (Cancian and Oliker, 1999; Lister, 1997). Drawing upon the work of Adam (2000) on timescapes we develop the notion of caringscapes as a means by which the processes of combining caring and working may be theorized and also incorporated into UK government policy related to caring (whether directly or indirectly). We draw attention to the inadequacy of public policy that does not incorporate an awareness of the demands of the everyday across the lifecourse, of which a spatial-temporal component should be fundamental. The authors propose a caringscape perspective as a basis for both future research and policy developments and conclude that an enhanced recognition of the fluidity and praxis of caring and gender is necessary to support the evolving roles of parents, especially mothers who combine caring and working.

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Community-based organizations for vulnerable children in South Africa: Reach, psychosocial correlates, and potential mechanisms

Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.

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Family carers’ distress and abusive behaviour: longitudinal study

Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.

Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).

Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).

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The 'Good Carer': Moral Practices in Late Modernity

Informal carers in the context of late modernity must negotiate two potentially conflicting discourses. One is associated with a post-traditional and increasingly individualized society characterized by ‘pure’ relationships with an emphasis on authenticity and choice. The other is a more traditional discourse found particularly in current health and social policy which relies explicitly on significant input by family carers. This ar ticle analyses the tensions arising from this paradox, specifically for older carers engaged in long-term care relationships. The first, theoretical, section provides an overview of the ‘subjective turn’ associated with modernity together with the heterogeneous ethics of governmentality associated with liberal rule. The second, empirical, section discusses ‘moral narratives’ drawn from carers’ accounts of caregiving. The conclusion highlights the social contexts in which carers make moral choices and identifies the links between policy normativities on the one hand and inequality and resistance on the other.

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Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia : pragmatic randomised controlled trial

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.

Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.

Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).

Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.

Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.

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Developing a strategy and action plan to promote equality and human rights: stakeholder consultation workshop outcome report: 29 November 2005

A society emerging from conflict, such as Northern Ireland, has an opportunity to tackle the full spectrum of discriminations affecting the society. The rights of citizens, the needs of carers and inequalities emerging from the history of conflict, are catered for. Access problems to health and social care services are still being experienced by hard to reach sections of our communities and health inequalities still persist. The strategy aims to change this consulting on  disabled peoples’ access to health and social care services, and the development of better quality services.

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'Just being selfish for my own sake . . .': balancing the views of young adults with intellectual disabilities and their carers in transition planning

In contrast to other forms of family caregiving, becoming the parent or carer of a child with an intellectual disability (ID) implies an ongoing responsibility beyond the attainment of chronological adulthood (Meyers et al., 1985; Todd and Shearn, 1996). At the same time, a discourse of self-determination pervades policy around transition to adult services in ID in England (Valuing People, 2001). In this paper we present a subset of data from a project which aimed to examine how the process of transition from child to adult services in ID is managed. Using data from 8 tape-recorded meetings in which transitions were planned and discussed, we examine what happens when the views of the parent/carer and the young adult are in apparent conflict. Drawing on the growing body of interactional work in the field (eg Rapley, 2004; Finlay, Antaki and Walton, 2008), we use conversation analysis to examine how professionals manage and negotiate this conflict and how some points of view or courses of action ultimately prevail over others. While the discourse of self-determination may prevail in English policy terms, we show how the fact that parents or carers ultimately have a key role in enabling the choices of the young person has a significant impact on these interactions.

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Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

Background: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.

Methods: Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.

Results: Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.

Conclusion: Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.

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Managing money in later life: help from relatives and friends

Growing numbers of older people need help with financial matters, and relatives and friends are likely to be the first involved. At the same time, older people's financial resources are increasingly complex. In some families, differences in expectations or conflicts of interest among different members may bring further complications. A scoping study found a lack of systematic information on the role of carers in helping older people manage money and assets. Other findings from the scoping study indicate both the growing importance and the complexity of asset management in later life; the information needs of older people and their relatives and friends; and the need for further research into these issues to inform the development of policy and practice.

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Screening for elder abuse in dementia in the LASER-AD study: prevalence, correlates and validation of instruments

Background: Several studies have investigated abusive behaviour by carers towards people with dementia, most using unvalidated scales; only two reported correlates of abuse after controlling for mediators and confounders, and these controlled for different factors.

Objective: To investigate the acceptability and validity of the Modified Conflict Tactics Scale (MCTS) and abuse correlates.

Methods: Eighty-six people with Alzheimer's disease and their family carers, originally recruited for a representative community study were interviewed. We asked carers about acceptability of the MCTS and investigated its validity by comparing scores to the Minimum Data Set (MDS) abuse screen (an objective measure) and testing hypotheses that MCTS score would correlate with the COPE dysfunctional coping scale but not carer education.

Results: Twenty-four (27.9%) were identified as abuse cases by interview. No care recipients (CRs) screened positive for abuse using the MDS screen. Seventy-two (83.7%) participants thought that the scale was acceptable, ten (11.6%) that it was neither acceptable nor unacceptable, and three (3.5%) that it was unacceptable. As hypothesised, MCTS scores correlated with dysfunctional coping scale score but not carer education.

Conclusions: This is the most comprehensive study so far in this field. The MCTS was acceptable and had convergent and discriminant validity for measuring carer abuse. The MDS failed to identify cases of abuse. Carer male gender and burden, and greater CR irritability, cognitive impairment but less functional impairment predicted carer abusive behaviour. Our findings appear to refute UK government elder abuse reduction policy which assumes that few incidents of abuse arise from carer stress.

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Accessing a hard to reach population: reflections on research with young carers in Ireland

In keeping with developments in children's rights, research is increasingly including the views of children. Accessing a hard to reach population of children can, however, raise significant ethical and methodological challenges for researchers. Negotiating access through gatekeepers, securing parental consent and limits on confidentiality are central issues in the recruitment process of children. This paper is based on a qualitative study of young carers in the Irish population. It outlines the methodological approaches employed to access a representative sample of young carers and the measures taken to fulfil ethical obligations. In the recruitment phase of the study, researchers attempted to strike a balance between two sometimes competing requirements, the need to protect children from harm and to respect children's competence. This paper reflects on the success and limitations of the approaches adopted towards achieving this balance, exploring the use of gatekeepers as a method to identify and recruit a hidden population, and revisiting the measures taken to comply with the ethical requirements of parental consent and limits on confidentiality.

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The experience of shame in older psychiatric patients: a preliminary enquiry

Shame is a complex set of attitudes, feelings and behaviours that tend to motivate hiding and, if provoked, can lead to conflict with others. It is also related to the exercise of power within the relationship of care and therefore may be a relevant factor if older adults are forced to accept increased dependency. There are no systematic enquiries into shame processes and older psychiatric patients. The experience of trait and situational shame and psychopathology was explored with 50 older psychiatric patients, using a range of questionnaire measures. As predicted, trait shame correlated significantly with anxiety and depression scores. There was preliminary evidence to suggest that being in need of others may be shame-provoking for some patients and may have a bearing on why some patients fear dependency, conceal symptoms and have conflicted relationships with carers.

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Risk and adult social care: identification, management and new policies. What does UK research evidence tell us?

Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.

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Ethical dilemmas in community mental health care

Ethical dilemmas in community mental health care is the focus of this article. The dilemmas are derived from a discussion of the results of a qualitative research project that took place in five countries of the European Union. The different stakeholders are confronted with the following dilemmas: community care versus hospital care (clients); a life with care versus a life without care (informal carers); stimulation of the client toward greater responsibility versus protection against such responsibility (professionals); budgetary control versus financial incentives (policy makers), and respect for the client versus particular private needs (neighbourhood residents). These dilemmas are interpreted against the background of a value based ethical model. This model offers an integral approach to the dilemmas and can be used to determine policy. The dilemmas are discussed here as the result of conflicting values-namely autonomy and privacy, support and safety, justice and participation, and trust and solidarity.

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Working across the interface of formal and informal care of older people

This chapter explores working partnerships with carers of older people and particularly carers in full or part-time employment who may have many stresses and conflicting demands in their lives. The legal and social context of caring is traced from The NHS and Community Care Act (DH, 1990) and subsequent care in the community initiatives. Another milestone was The National Strategy for Carers (DH, 1999a), though there has only recently been a government commitment to partnership with carers against very patchy previous provision. Six reasons are advanced for the relative powerlessness of carers compared to service providers. There are 5.2m carers in England and Wales and 1m of these providing over 50 hours of care weekly. There is a brief outline of the caring experience and three individual case studies. The National Strategy for Carers identified four rights for carers in maintaining their own health and lifestyles and how partnerships with service providers might operate, in addition to support services. [...]

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Private family arrangements and the welfare of adults who lack capacity: an analysis of the safeguarding vulnerable groups bill

The safeguarding vulnerable groups bill aims to improve the system of checks on staff and volunteers who want to work in social care, health or education. However, it creates different levels of protection for children and vulnerable adults. This article sets out the concerns expressed by a small coalition of disability charities that argued for improvements to the bill during its passage through Parliament. In particular, they wish to rectify the bill's failure to provide for mandatory checks on staff working privately for vulnerable adults who lack the capacity to manage their own affairs. These arguments were opposed by carers' organisations who wanted to avoid increasing the regulatory burden on carers. The authors critically examine these arguments, and ask whether there is a conflict of interests between carers and vulnerable adults.

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Conflicting agendas between consumers and carers: the perspectives of carers and nurses

Increasingly, Australian government policy advances an expectation that consumer and carer participation will be present in all aspects of mental health service delivery. A review of the literature suggests that consumers and carers actively seek the opportunity to participate but are frequently hampered by barriers. However, government policy documents tend to discuss consumers and carers with regards to participation as though their needs and desires are essentially similar. This paper presents the findings of a qualitative research project involving in-depth interviews with carers and mental health nurses. The issue of conflict between the issues for consumers and carers emerged as a major theme. This issue is explored and discussed in light of the goals of current mental health policy. It is concluded that conflicting agendas are apparent and must be addressed if genuine participation in service delivery is possible for both consumers and carers.

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When they don't die: Prognosis ambiguity, role conflict and emotion work in cancer caregiving

Informal carers of cancer patients have high rates of burden, stress, anxiety and unmet needs; yet, some describe caregiving as fulfilling. Building on the work of Thomas and colleagues, this study takes a sociology of emotions approach to understanding variations in carers of cancer patients' emotional experiences, using interview data with 32 carers of a spouse with cancer. Analysis indicates that a clearly terminal (negative) prognosis facilitates clear priorities, unambiguous emotion management and improved social bonds. A more ambiguous (positive) prognosis, that includes a greater chance of survival, fosters role conflict, clashing feeling rules and ongoing guilt within spousal carers. This study highlights the importance of a prognosis to emotion management, underscoring a phenomenon that is likely to grow as survival rates continue to improve and explaining some of the variation in carers' experiences.

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Abuse of people with dementia by family carers: representative cross sectional survey

This study used a representative cross sectional survey to determine the prevalence of abusive behaviours by family carers of people with dementia. Participants were 220 family carers of people newly referred to secondary psychiatric services with dementia who were living at home. Participants were selected from community mental health teams in Essex and London. The main outcome measure used were psychological and physical abuse (revised modified conflict tactics scale). 115 carers reported some abusive behaviour and 74 reported important levels of abuse. Verbal abuse was most commonly reported. Only three carers reported occasional physical abuse.  Abusive behaviour by family carers towards people with dementia is common, with a third reporting important levels of abuse and half some abusive behaviour. Results found few cases of physical or frequent abuse, although those with the most abusive behaviour may have been reluctant to report it.

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A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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Risk factor characteristics in carers who physically abuse or neglect their elderly dependants

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

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Employment and Informal Care: Sustaining Paid Work and Caregiving in Community and Home-based Care

Informal care provides the often hidden foundations of policies promoting care in the community and Ageing in Place. This paper examines the current impasse concerning those who are employed and seek to provide care, canvassing current and future possibilities for finding a way through the existing conflict between sustaining employment and providing informal care in the home. Focusing on the issues that emerge regarding support of older (aged) care recipients, the paper first considers the demographic, economic and democratic and governmental policy causes of the current problems. It then examines the emerging care gap expressed through the joint crisis of informal and formal care. The final section considers the solutions proposed to help re-embed care in the societies of the 21 century. These include developments related to the workplace and employment, as well as solutions concerned with providing extra services, expanding the care workforce, paying family caregivers and using technology. 

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Supporting working carers: do policies in England and The Netherlands reflect 'doulia rights'?

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of ‘doulia’ (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and ‘doulia rights’ (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers’ policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

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More than one wavelength : identifying, understanding and resolving conflicts of interest between people with intellectual disabilities and their family carers

The present paper describes conflicts of interest in families which include someone with intellectual disabilities. Data were taken from a study concerned with the 1995 Carers Act. The research examined the experiences and views of 51 families who had some kind of assessment by a social services department. Cases were analysed where it was found that carers, the people for whom they cared and the assessors did not agree about such conflicts. Assessors sometimes stereotyped families and spoke of conflicts of interest when the situation was more complex. In particular, the real conflict was often between the whole family and an inadequate service system that did not offer enough support or choices to the individual. Conflicts which had occurred were related to three major motives driving carers: (1) the need for a break from caring; (2) the need to speak for their disabled relative; and (3) their concern for standards of behaviour. The present authors report on how these situations were handled by assessors and conclude with some recommendations for good carer assessments which will help to resolve conflicts of interest. A greater degree of informed choice for individuals with intellectual disabilities will in itself resolve many potential conflicts of interest.

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A systematic review and thematic synthesis of quality of life in the informal carers of cancer patients with cachexia

Background: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals.

Aim: To identify quality of life issues that are relevant to carers of cancer patients with cachexia.

Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. 

Data sources: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included.

Results: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional’s input, conflict with the patient and negative emotions.

Conclusion: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve.

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Explaining the use and non-use of community-based long-term care services by caregivers of persons with dementia

The purpose of this paper is to synthesize and critically evaluate the current literature that explains the use and non-use of formal community-based long-term care services by caregivers of persons with dementia. There are four issues related to formal community service use by caregivers: reluctance to initiate formal services; under-utilization of available services; delayed utilization of services; and inappropriate utilization of services. Despite substantial research efforts to understand these issues, the reasons for low rates of community service use by this population remains unclear. Common methodological problems and limitations in the underlying theoretical assumptions in the literature, as they relate to caregivers of persons with dementia, have limited the usefulness of the current research for informing practice and policy. A conflict-theory model of decision-making is proposed as an alternative theoretical framework for understanding the particularity and complexity of the decision-making process leading up to the initiation of formal service use. Utilization of formal services is a result of a complex and subjective decision-making process that is unrelated to objective circumstances. The proposed conflict theory model of decision-making can inform policy and practice regarding the development of appropriate, timely and individualized interventions to facilitate the use of formal services by caregivers of persons with dementia.

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Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents' narratives

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

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Improving the interface between informal carers and formal health and social services: A qualitative study

Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. Community setting including urban and rural areas of New Zealand. Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. Conclusion: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.

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Policies at odds

Reports how a complaint about a refusal to re-house a carer nearer her mother uncovered a conflict between a council's policies on social services and housing.

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The caregiving role following percutaneous coronary intervention

Aim.  The aim of this study is to describe the experience of caregivers of individuals who have had a percutaneous coronary intervention (PCI).

Background.  Decreased lengths of hospital stay and an increased emphasis on chronic disease self-management increase the importance of carers in assisting in recovery and lifestyle modification.

Design.  Cross-sectional dual-moderated focus group design.

Method.  Three focus groups using a dual facilitation approach were held in the cardiac rehabilitation setting of a tertiary referral hospital in metropolitan Sydney. All sessions were audio recorded, transcribed and thematically analysed.

Results.  Four themes emerged from the data: (1) a gendered approach to health, illness and caring; (2) shock, disbelief and the process of adjustment following PCI; (3) challenges and changes of the carer–patient relationship and (4) the needs of the carer for support and information. Issues emerging from this study parallel other findings describing the experience, yet provide new insights into the issues surrounding PCI.

Conclusion.  These findings highlight the need for including carers in care planning and decision-making and providing them with support and resources.

Relevance to clinical practice.   

  • Emphasises the importance of preparing carers of the likely experience following a PCI.
  • Demonstrates the degree to which vigilance, deferment of carer-health needs and role conflict impact on the carer’s personal relationship.
  • Demonstrates the need for formal support interventions for carers of patients who have had PCI.
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Care at home for people with dementia: as in a total institution?

This article examines three kinds of social relationship likely to be present when people with dementia are cared for at home by relatives or friends: custodial care, an intimate relationship, and home-life. Using Goffman's three defining aspects of custodial care – routinisation, surveillance and mortification of the self – the paper examines whether these characterised the care of people with dementia at home and, if so, whether they conflicted with the intimate relationship and with home-life. The study involved sustained observations and interviews with 20 people with dementia and their carers in and around London, and qualitative analysis of the data. It was found that all three aspects of custodial care were present although not fully realised, and that they led to difficulties, many of which were associated with the concurrent pursuit of an intimate relationship and home-life. In all cases, daily life was routinised partly to help accomplish care tasks but was found monotonous, while surveillance was usual but restrictive, and prevented both the carers and those with dementia from doing things that they wished to do. Those with dementia were distressed by the denial of their former identities, such as car-driver or home-maker, and by being treated like children. Both the carers and the people with dementia had various ways of balancing custodial care, their intimate relationships and home-life, such as combining routines with other activities, evading surveillance or carrying it out by indirect means, and there were many attempts to maintain some semblance of former identities.

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Robots and the Division of Healthcare Responsibilities in the Homes of Older People

This paper briefly describes the method of a qualitative study, which used focus groups to elicit the views of older people and formal and informal carers of older people on the ethical issues surrounding the introduction of social robots into the homes of older people. We then go on to sketch some of the tensions and conflicts that can arise between formal carers, informal carers, and older people when trying to negotiate the task of dividing care responsibilities, and describe how the introduction of robots may exacerbate, or ease, these tensions. Data from the qualitative study is used to indicate where participants acknowledged, identified and discussed these issues.

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Adult social care: scoping report: summary

The Law Commission’s Tenth Programme of Law Reform includes a project to review adult social care law in England and Wales. The Department of Health is the lead department for this project. The first stage of the project is to undertake a scoping review of adult social care law and to publish a report setting out the proposed agenda for the substantive project. This summary provides a brief overview of the areas of reform identified in the Scoping Report and the direction of our review in each area. 

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Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Results: Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.

Discussion: Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

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Exploring factors that influence informal caregiving in medication management for home hospice patients

Objective: To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients.

Methods: Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4 hospice programs in the Chicago metropolitan areas. Qualitative analysis was conducted consistent with the grounded theory approach.

Results: In general, informal caregivers and hospice providers identified similar key factors that facilitated or impeded caregivers' process in managing medications. Caregivers' life experience and self-confidence were considered assets that facilitated medication management. Limitations impeding the process included caregivers' negative emotional states, cognitive and physical impairments, low literacy, other competing responsibilities, as well as patients' negative emotional states and complex medication needs. Furthermore, the social context of medication management emerged as a salient theme: caregivers' good interpersonal relations with patients facilitated medication management, whereas poor communication/relations among caregivers within a support network impeded the process. While both study groups discussed the positive attributes of good caregiver–patient relations and support from multiple caregivers, hospice providers were cautious about the potential adverse influence of close relations with patients on caregivers' decision making about medications and discussed poor communication/relations among informal and privately hired caregivers that often resulted from family conflicts and/or a lack of long-standing leadership.

Conclusion: Our findings suggest additional intervention points, beyond knowledge and skill building, that could be addressed to support caregivers in executing medication responsibilities at home for hospice patients.

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Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.

Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.

Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.

Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

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Elder abuse : a systematic review of risk factors in community-dwelling elders

Objective: to undertake a systematic literature review of risk factors for abuse in community-dwelling elders, as a first step towards exploring the clinical utility of a risk factor framework. Search strategy and selection criteria: a search was undertaken using the MEDLINE, CINAHL, EMBASE and PsycINFO databases for articles published in English up to March 2011, to identify original studies with statistically significant risk factors for abuse in community-dwelling elders. Studies concerning self-neglect and persons aged under 55 were excluded. Results: forty-nine studies met the inclusion criteria, with 13 risk factors being reproducible across a range of settings in high-quality studies. These concerned the elder person (cognitive impairment, behavioural problems, psychiatric illness or psychological problems, functional dependency, poor physical health or frailty, low income or wealth, trauma or past abuse and ethnicity), perpetrator (caregiver burden or stress, and psychiatric illness or psychological problems), relationship (family disharmony, poor or conflictual relationships) and environment (low social support and living with others except for financial abuse). Conclusions: current evidence supports the multifactorial aetiology of elder abuse involving risk factors within the elder person, perpetrator, relationship and environment.

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Spiritual care nursing: what cancer patients and family caregivers want

Aim.  This paper presents findings from a study that was designed to understand, from the perspective of cancer patients and their family caregivers, what spiritual care is wanted from nurses.

Background.  Distressing and transformative spiritual responses to living with cancer have been documented. Although there is momentum for providing spiritual care, previous research provides scanty and conflicting evidence about what are the clients’ wishes or preferences with regard to receiving spiritual care from nurses.

Methods.  A convenience sample of 156 adult cancer patients and 68 primary family caregivers, most of whom were Christians, independently completed the Spiritual Interests Related to Illness Scale and a demographic form, both of which were self-completed questionnaires.

Results.  A variation in responses to items about nurses providing spiritual care therapeutics was observed; means and medians for these items mostly fell between 2 (disagree) and 3 (agree) on a scale of 1–4. Generally, therapeutics that were less intimate, commonly used, and not overtly religious were most welcomed. No significant differences were found between patient and caregiver preferences. A modest, direct correlation was observed between frequency of attendance at religious services and increased preference for nurse spiritual care.

Conclusion.  For both patients and caregivers, nurses must be sensitive to providing spiritual nurture in ways that are welcomed.

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Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers

Purpose: Anxiety is prevalent, distressing, and understudied among patients with advanced lung cancer and their family caregivers. Preliminary evidence suggests that anxiety is not only present in both patients and caregivers but shared by the dyad. Few studies have examined the nature of shared anxiety and its impact on patient-caregiver dyads.

Methods: This study was developed to identify shared causes and manifestations of anxiety experienced by patients with stage IV non-small cell lung cancer (NSCLC) and their primary caregivers. Data were collected through in-depth semi-structured interviews with ten matched patient-caregiver dyads and one unmatched patient (N = 21) recruited from two comprehensive cancer care centers.

Results: Using grounded theory, eight themes emerged characterizing shared causes and manifestations of anxiety: (1) uncertainty, (2) loss and impending loss, (3) changing roles, (4) conflict outside the dyad, (5) finances, (6) physical symptoms, (7) fears of decline and dying, and (8) life after the patient’s passing. All themes were shared by patients and caregivers.

Conclusions: Implications for future research include the development and evaluation of interventions to reduce anxiety in cancer patient-caregiver dyads.

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Is There a Trade-off Between Parent Care and Self-care?

Caregiving for family members is often described as a 36-hour day. Previous literature has suggested that family caregivers have little time to attend to their own health needs, such as participating in leisure-time physical activity. Using data from the Health and Retirement Study, we analyze whether time-allocation decisions reflect a conflict between time devoted to informal care and time devoted to self-health promotion through physical activity. The empirical model is a system of four correlated equations, wherein the dependent variables are hours spent caregiving, frequency of moderate and vigorous physical activity, and hours spent in paid work. Results from joint estimation of the four equations indicate limited evidence of a competition between time spent in caregiving and frequency of physical activity. Parental factors that increase allocation of care time to parents do not comprehensively induce reductions in the frequency of any type of physical activity, or in hours of work, among either men or women.

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'Do I stay or do I go?'-job change and labor market exit intentions of employees providing informal care to older adults

This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.

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Gatekeepers, proxies, advocates? The evolving role of carers under mental health and mental incapacity law reforms

This article explores the potential impact of the mental health and mental incapacity law reforms on carers. The reform proposals anticipate a number of overlapping and at times conflicting roles for carers (including those of gatekeeper, decision-making proxy and advocate), which is suggestive of an ongoing ambivalence toward the caring role at the level of ethics, policy and strategic planning.

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The role of friends in caregiving

Changes in the formal health care system and in the health of the population are likely to increase the need for informal care of the sick and disabled. At the same time, high rates of divorce, a retreat from marriage, and increasing participation of women in the labor force are likely to decrease the ability of families to provide care. This research uses data from the National Survey of Families and Households to examine the role that friends play in the provision of care. The authors find that among caregivers, women providing care to a friend are more likely to be age peers and less likely to be employed or married than family caregivers. Friends seem less likely than family to take on care responsibilities when those responsibilities may conflict with other roles. If friends are to become a greater part of the care network, policies that encourage and enable the participation of nonfamily members will be important.

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Changing intergenerational solidarities within families in a Mediterranean welfare state - Elderly care in Italy

Intergenerational solidarity within families is the traditional source of support for dependent elderly people in southern European countries, where care needs have been mainly fulfilled by the unpaid work of women. Recently, the decline of informal care and the persistent lack of supply of formal services have been accompanied by the growth of commercial services mostly provided by migrant women hired by families in the grey market. The article is based on a qualitative study and explores the social processes underlying these changes. It suggests that although intergenerational solidarity is still crucial, it is expressed less through the direct provision of care and more through the supervision of paid services. This shift, which results mainly from a strategy adopted by middle-class women, challenges traditional gender relations and divisions of work. Moreover, it produces employment relations characterized by low pay and underprotection and reflecting conflicts over time and space typically present in informal care relations.

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Experiences of 'care' in mental health

The concept of care has attracted considerable interest and there has been growing attention both to the needs of carers and how they may sometimes conflict with those of service users. Draws on initial research findings to examine experiences of care in mental health for men and women and for carers and users.

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Women caring for elderly family members: shaping non-traditional work and family initiatives

Caring for a dependent elderly family member and employment are competing demands for men, and especially women, who work in the United States. Women traditionally function in the caregiving role for parents in need. Yet unlike their mothers before them, modern day women caring for elderly parents have more roles, and thus more role demands upon them. Traditional familial roles as wives, homemakers, and mothers are more often coupled with roles as paid workers and as caregiving daughters to dependent parents. Maintaining today's families via the kin-keeping role may be increasingly difficult for the employed elder caregiver, typically a female in her mid-40s to late 50s. The burdens employed caregivers experience have effects in the workplace, for example, attendance problems and poor job performance. Yet, the research in this area is relatively sparse, especially in data on the effect of family status on numerous measures of productivity and employee performance. How research can deliver assistance in programming and policy development of eldercare benefits in the workplace by demonstrating which categories of employees (i.e., by gender, age, race, ethnicity, occupational status, and earnings) are most affected by elder caregiving and in what ways is presented. Family and work initiatives to help maintain this balance between family and job responsibilities are discussed and recommended. 

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Care services for frail older people in South Korea

This paper examines the changed social circumstances of older people in South Korea and specifically the increased need for formal health and social services for those who are frail and have no informal carers. The article begins with a summary account of the country's exceptionally rapid demographic, economic and social transformations, which demonstrates a widening gap between the population's expectations and needs, and health and social service provision. It then examines the recently initiated and now burgeoning welfare programmes, with particular attention to health and social services for sick and frail older people. Most extant care services are accessed mainly by two minorities: the very poor and the rich. The dominant policy influence of physicians and a history of conflict between traditional and western medicine probably underlies the low current priority for ‘care’ as opposed to ‘cure’, as also for the management of chronic conditions and rehabilitation. Neither long-term care services nor personal social services are well developed. There is a marked disparity between the acute services, which are predominantly provided by private sector organisations in a highly competitive market and broadly achieve high standards, and public primary care and rudimentary residential services. The latter are weakly regulated and there are many instances of low standards of care.

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The daily living for informal caregivers with a partner with Parkinson's disease - an interview study of women's experiences of care decisions and self-management

Aim.  To throw light on the lived experiences of female partners of patients with Parkinson disease living at home.

Background.  It is known that daily life with a partner with Parkinson’s disease entails radical upheaval in the family, in particular for the female partner.

Methodology.  A phenomenological hermeneutic approach was used. Interviews with female partners (N = 10) of patients with Parkinson disease who were living at home were conducted in Denmark in 2008. The French philosopher Ricoeur’s theory of interpretation guided the data analysis.

Conclusion.  This study shows that essential to the women’s experiences was the impact on daily life and changes to their quality of life in living close to a partner with Parkinson’s disease. As the disease gradually developed to affect motor, cognitive and emotional functioning, the need for care decisions related to help with daily activities and functions arose, and the women became informal caregivers.

Relevance to clinical practice.  The results could add to health providers’ understanding of the significance of informal care and raise the consciousness of women caregivers about how their own quality of life diminishes by setting aside their own needs in favour of the care needs of their chronically ill partner. The women’s contribution should be better valued, and they should be supported to a greater extent to retain/maintain their self-management capacity. Respite and relief from the care burden should especially be provided for women who live at home with a chronically ill partner.

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Forensic Nursing Interventions With Patients With Personality Disorder: A Holistic Approach

Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients’ cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.

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Evidence in policy and practice: what kinds of research designs?

Summary: Over-generalization of the ‘effectiveness hierarchy’, and echoes of past paradigm wars about methodology, persist in generating conflicting judgements about the value of different research designs for evidence-based practice. A range of ways in which the worth of research is actually judged, and might be judged, are elaborated. The article then focuses on specific examples of the use of research, considering the kinds of evidence which could usefully support practice with carers, and the evidence which has been used to justify policy (the National Service Framework) for older people. The article concludes by using ideas about complex adaptive systems to illustrate similarities between uses of evidence in policy and individual practice.

Findings: Fundamentally, considerations which affect our judgements about the worth of research relate to the values expressed in the process of conducting the research, and the likely usefulness of the results. Inboth policy and practice, a whole range of research evidence can be, and is, used to support values, identify and understand problems, inform negotiations, and suggest solutions, without necessarily determining action to be taken in particular cases.

Applications: The article is a contribution to the ongoing debate about evidence-based practice in social care. It aims to clarify concepts and realities and thus promote an approach to this issue which remains rigorous but is inclusive with regard to both methods and stake aholders.

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The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study

Background: Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers’ close relatives after the stroke.

Objectives: This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic.

Participants: Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed.

Methods: The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study.

Results: Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives’ process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges.

Conclusion: This study highlights the middle-aged relatives’ realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life.

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Impact of early dementia on caregivers: a review

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided.

Methods: PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article.

Results: Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis.

Conclusions: Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life.

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Burden of caring: risks and consequences imposed on caregivers of those living and dying with advanced heart failure

Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.

Recent findings: A systematic search in PubMed over the period 2013?2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.

Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.

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Adult social care: a scoping report

A project to review the law relating to the provision of adult social care in England and Wales. The legislative framework for adult residential care, community care, adult protection and support for carers is inadequate, often incomprehensible and outdated.  It remains a confusing patchwork of conflicting statues enacted over a period of 60 years.  There is no single, modern statute to which service providers and service users can look to understand whether (and, if so, what kind of) services can or should be provided. The overall aim of the project is to provide a clearer and more cohesive framework for adult social care.  This would help to ensure that service users, carers, social care staff, health professionals and lawyers are clear about rights to services and which services are available.  It will also aim to modernise the law to ensure that it is no longer based on out-dated principles. The first phase of this project will be a scoping report.  This will aim to delineate clearly the scope of the project and provide it with a detailed agenda for reform.

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Working carers in Poland - successful strategies for reconciliation of work and care of an older adult

This paper focuses on the possible methods and measures that individual Polish informal carers utilize in order to manage the double burden of work and care. The strategies they use are understood as conscious and systematized ways of tackling the everyday obligations in order to successfully reconcile different duties. Based on interviews with working carers (N=58), the strategies they invented (either intentionally or accidentally) were intended to remedy the stress resulting from multiple conflict situations in everyday life. These strategies were individual approaches of every carer to the often unique situation of reconciliation, which could nevertheless form a set of practical advice for the benefit of working carers in Poland, but also in other countries.

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Caring for older adults: the benefits of informal family caregiving

Recent literature emphasizes the burdens of caregiving, but there has been limited focus on benefits accrued by family members who care for older adults. This article describes phase three of a research study of employed caregivers in the workplace. Phase three of the study was a caregiver support group. Data from the support group meetings were content analyzed and interpreted using a lifespan perspective. Four themes relevant to caregiver benefits emerged: celebrating the small things, resolving past hurts and conflicts, developing personal strength and aging readiness, and experiencing the older person's full life. The shift from perceived burden to perceived benefit occurred gradually among support group members. Routine and intentional assessment of caregiving benefits or rewards within a supportive milieu may mitigate burden among people who care for older family members.