Despite considerable academic attention to the role of family caregivers within the general population, little research has been conducted with Indigenous families. This qualitative study aims to fill that gap by focusing on the experiences of Metis caregivers providing care for older Metis adults. Focus groups and interviews were conducted with Metis family caregivers (n = 79), Metis Elders (n = 11) and formal caregivers (n = 8). Although there are considerable parallels in the caregiving experiences identified in this Metis study with those already documented in the literature, there are nonetheless important differences for providing culturally responsive care to Metis seniors.

For this study, we adapted the Montgomery Borgatta Caregiver Burden Scale, used widely in the United States, to the Saudi Arabian context. To produce an Arabic, culturally sensitive version of the scale, we conducted semi-structured interviews with 20 Saudi family caregivers. The Arabic version of the scale was tested, and participants were asked to comment on the appropriateness of items for the construct of “caregiver burden” using the repertory grid technique and laddering procedure – two constructivist methods derived from personal construct theory. From interview findings, we examined the content of the items and the caregiver burden construct itself. Our findings suggest that the use of constructivist methods to refine constructs and quantitative instruments is highly informative. This strategy is feasible even when little is known about the investigated constructs in the target culture and further elucidates our understanding of cross-cultural variations or invariance of different versions of the scale.

The study is aimed to better understand how post-acute-care services help persons with acquired brain injury (ABI) and their families following acute-care discharge. Participants included 21 primary family caregivers of persons with ABI. Participants reported their level of satisfaction with 14 different post-acute-care ABI services following discharge from an acute-care ABI facility in a large south-western city in the United States. Participants completed a survey following the discharge (on average 8.1 months) of their family member from acute-care services. Surveys included both quantitative and open-ended questions. The present study focused on participant satisfaction ratings and perceptions of helpfulness among the 14 different service areas. The average satisfaction rating across the 14 service areas was 73.4%. Professional consultation and assessment (81.8%) received the highest satisfaction rating, followed by therapy and intervention (77.9%), and peer support (51.9%). Open-ended question responses on the helpfulness of post-acute-care services focused on (a) therapy and intervention and (b) professional consultation and assessment. Study findings highlight the need to track the use of ABI services from the acute-phase through long-term community adjustment. Findings also underscore the importance of targeting interventions and services specific to the post-acute phase of ABI rehabilitation.

There is a paucity of research exploring how spouses to older adults with multiple chronic conditions make meaning of their caregiving experience. For this study, we asked: What is the experience of spousal caregivers to persons with multiple chronic conditions? We applied Thorne’s interpretive description approach, interviewing 18 spouses who provided a rich description of their caregiving experience; interviews were transcribed verbatim and thematically analysed. Themes were categorized according to challenges encountered, rewards gleaned, and sustaining strategies employed by participants in caregiving to their spouse with multiple chronic conditions. Unique findings relate to the challenges inherent in decision-making within the context of multiple chronic conditions. This article begins to address the gap in the literature regarding the caregiving experience within the context of multiple chronic conditions.

The study aimed to understand the use and barriers to use of post-acute-care services by persons with acquired brain injury (ABI). A total of 21 primary family caregivers of persons recently discharged from an ABI acute-care facility in a large southwestern city in the United States participated. Service use in 14 domains appeared consistent with post-discharge needs. In five service areas, participants were not aware the service was available. Professionals in acute ABI rehabilitation units need to be fully aware of the range of available potential supports and diligent in informing injured persons and their families about available post-discharge services.

Demographic and social trends lead to a variety of micro-level and internal structural contexts that influence caregiving in families with older members. The results of macro-level changes have received little focused attention in the aging literature, where much of the caregiving research has addressed issues within the context of traditional family structure. Yet the conventional nuclear family model is increasingly uncommon as new, pluralistic models of family life are emerging in contemporary society. The majority of elder care is provided by relatives, albeit with varying patterns of involvement and responsibility across family structures. Both conventional and pluralistic families face challenges in meeting the care needs of their oldest members, leaving some older adults at risk of having unmet needs. Additional research on family risk and resilience related to the care of older relatives is warranted, particularly with respect to pluralistic models of family life.

This study examined correlates of caregiving at the end of life provided by adult children to their older parents and the role of gender of adult children in family caregiving in rural China. Data came from five waves of the Longitudinal Study of Rural Elder’s Well-Being in Anhui Province, China, over 12 years and from a post-mortality survey. Hierarchical linear modeling was used. Findings demonstrated that the birth order of adult children, prior geographic distance, and prior intergenerational support exchange were significantly associated with family caregiving at the end of life. Eldest children, compared to other siblings, provided the most end-of-life caregiving to their parents. Children cohabitating with older parents before death provided the most caregiving, compared to other siblings. Adult children who had previously exchanged instrumental support with older parents before death, especially sons, tended to provide the most caregiving, compared with that by others, at end of life.

To further address the potential factors that lead up to elder abuse in domestic settings, this paper proposes a model from a communication approach to explain dyadic influences between the family caregiver and the elderly care receiver that give rise to the abuse. That is, dysfunctional communication between the caregivers and care receivers may, therefore, increase the likelihood of elder abuse. Grounded in Bugental and her colleagues’ work (1993, 1999, 2002) on child abuse, we propose a power-oriented communication model based, in part, on research in the fields of family violence and intergenerational communication to explain the likelihood of occurrence of elder abuse in family caregiving situations. We argue that certain risk factors pertaining to caregivers’ characteristics – those who perceive high stress in caregiving, have mental health issues, have a history of substance abuse, and/or display verbal aggressiveness – may be more likely to attribute considerable power to those elderly under their custodianship. At the same time, such caregivers tend to feel powerless and experience loss of control when interacting with their elderly counterparts. When an elderly care receiver displays noncompliant behaviors, caregivers may be prone to employ abusive behaviors (in our model, it refers to physical abuse, verbal abuse, or communication neglect) to seek such compliance. Consequences of such abuse may result in lower self-esteem or lower confidence in one's ability to manage his/her life. It is suggested that researchers and practitioners investigate both parties’ interactions closely and the role of elderly care receivers in order to detect, intervene, and prevent elder abuse.

Background: Family involvement in long-term care (LTC) is important but it can prove challenging and result in conflict with staff if families do not feel connected to the LTC facility or if they believe that their contributions are undervalued. According to McMillan & Chavis (1986), sense of community (SOC) refers to a feeling of belonging, having influence, having needs met, and having an emotional connection to individuals in a community, and may be particularly essential for family caregivers of military veterans in LTC. This is the first study that evaluates SOC among family caregivers in LTC.

Methods: Semi-structured interviews and self-report questionnaires assessing caregiver demographics, caregiving variables, and SOC were administered to 46 family caregivers.

Results: Caregivers endorsed a SOC that was positively related to key caregiving variables, such as family adjustment and satisfaction with care, and was negatively related to conflict with staff. Notably, caregivers’ connections to the military community were positively related to SOC in LTC. Multiple regression analyses indicated that satisfaction with care accounted for the most variance in SOC (32.7%).

Conclusions: This is the first study that examines SOC among family caregivers of military veterans in LTC, a subgroup of family caregivers with unique histories and needs. Although there are measures designed to assess family members’ level of satisfaction with different facets of LTC, SOC provides unique information about whether family members feel part of the LTC community as valued partners in care. SOC is an important yet understudied construct that could contribute substantially to our understanding of family-focused care.

The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

Despite a recognition of the importance of families in providing informal care to frail seniors, there is no consensus as to who constitutes the caregiving family. The authors discuss the current ideology about the caregiving family and the state of knowledge about its composition and propose that the caregiving family has actual and potential elements. Based on the assumption that the concept of “who's the family” is socially constructed, the authors argue that it is essential to understand “who's the family” from the perspective of primary caregivers in order to evaluate the nature of family support. This paper challenges the notion that the cargiving family is equivalent to the kin family. It is argued that the status quo in which a simplistic view of family caregiving is used to justify pressure on families to provide more care is not sustainable.

This article examines to what extent the presence or absence, adequacy or inadequacy of formal services impacts on the work trajectory of caregivers to elderly relatives. The article is based on a qualitative study with 20 employed caregivers' whose elderly relatives received homecare services from one of two Montreal CLSCs: Results reveal the key role played by formal services in caregivers' attempts to juggle caregiving demands with those of their employment. They illustrate how the presence or the insufficiency of these services, their adequacy or inadequacy, combined with the other accommodations which caregivers put into place, can be determinants in caregivers' decisions to continue working and in their capacity to function well in the work place.

In response to the contradictions appearing between, on the one hand, government promotion of family caregiving for elderly parents and, on the other, the rise of autonomist values (as documented in the literature), we surveyed a number of elderly people living with disabilities about the kind of assistance they would like to receive. The present qualitative, thematic analysis is based on the accounts given by 19 elderly people who receive assistance. The findings show that the position of elderly people with respect to their desire to receive (or not receive) substantial assistance from their family rests on a set of values, wishes, and/or fears – including, particularly, adherence to the value of autonomy, the desire to respect freedom (one's own as well as that of others), adherence to norms of familial duty, attachment to one's home, the value placed on solitude and privacy, and the degree of emotional closeness between the elderly and their children. Access to quality formal services also stands out as a factor enabling elderly people to actualize the desire for care which they elicited within the framework of this analysis.

The purpose of this feminist narrative study was to examine the experiences of women in four different health professions (nursing, medicine, physiotherapy, and social work) who provided care to elderly relatives. Although caring is a central and common feature of the personal and professional lives of many women (Baines, Evans, & Neysmith, 1991; Baines, 2004), the separation of professional, paid caregiving from family, unpaid caregiving among health care providers is problematic. Study findings suggest that female health professionals who assume familial responsibilities continually negotiate the boundaries between their professional and personal caring work. Despite the use of a variety of strategies for managing their double-duty caregiving demands, many women experienced a dramatic blurring or erosion of these boundaries, resulting in feelings of isolation, tension, and extreme physical and mental exhaustion. These findings suggest that women who are double-duty caregivers, especially those with limited time, finances, or other tangible supports, may experience poor health, which warrants further study.