Challenges in Caring for Unbefriended Residents in Long-term Care Homes: A Qualitative Study.

OBJECTIVES: This study examined challenges experienced by long-term care staff in caring for unbefriended residents who are incapacitated and alone. These residents often are estranged from or have no living family or live geographically distant from them and require a public guardian as their surrogate decision-maker. To date, research on unbefriended older adults has focused on those living in acute care and community settings. Little is known about those living in long-term care homes. METHOD: We conducted semi-structured interviews with 39 long-term care staff (e.g., registered nurses, care aides, social workers) and 3 public guardians. Staff were sampled from seven long-term care homes in Alberta, Canada. We analyzed interview transcripts using content analysis and then using the theoretical framework of complex adaptive systems. RESULTS: Long-term care staff experience challenges unique to unbefriended residents. Guardians' responsibilities did not fulfill unbefriended residents' needs, such as shopping for personal items or accompanying residents to appointments. Consequently, the guardians rely on long-term care staff, particularly care aides, to provide increased levels of care and support. These additional responsibilities, and organizational messages dissuading staff from providing preferential care, diminish quality of work life for staff. DISCUSSION: Long-term care homes are complex adaptive systems. Within these systems, we found organizational barriers for long-term care staff providing care to unbefriended residents. These barriers may be modifiable and could improve the quality of care for unbefriended residents and quality of life of staff. Implications for practice include adjusting public guardian scope of work, improving team communication, and compensating staff for additional care.

Caregivers' failure to thrive: A case for health and continuing care systems transformation.

Excluding family caregivers and their goals from healthcare thinking and system design has contributed to their "failure to thrive." Family caregivers are diverse, with dynamic, enduring, and variable life course care trajectories that are largely ignored. Using a co-design approach, caregivers prioritized their goals across seven life domains in an on-line survey. Physical, mental, and emotional health goals were top priorities across all ages. However, care-related goals were not caregivers' highest priority. Goals related to financial well-being, social connections, employment, education, and care were variable across ages. Our findings suggest that transforming health and continuing care systems begins with recognizing variability of caregivers' goals across their life courses. Adopting a co-design approach with family caregivers may serve as a model to develop a collaborative health and continuing care system. One that recognizes and supports family caregivers to achieve their goals, so that they not only survive but thrive.

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

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

The Impact of Spouse's Illness on Depressive Symptoms: The Roles of Spousal Caregiving and Marital Satisfaction.

OBJECTIVES: To examine (a) the relationship between own depressive symptoms and spouses' health condition changes among mid- and later-life couples and (b) the roles of marital relationship quality and spousal caregiving in this relationship. METHOD: Fixed-effect analyses were conducted using data from 3,055 couples aged 45 and older from Waves 1 (2006) to 4 (2012) of the Korean Longitudinal Study on Ageing. RESULTS: Spousal stroke was linked with higher depression symptoms. Spouses' onset of cancer was related to an increase in depressive symptoms for wives, but not for husbands. Spousal caregiving and marital satisfaction were significant moderators: Wives caring for spouses with cancer reported more depressive symptoms than those not providing care; husbands caring for spouses with lung disease reported more depressive symptoms than those not providing care. The associations between wives' heart disease, husbands' cancer diagnosis, and depressive symptoms were weaker for couples with higher marital satisfaction. DISCUSSION: The findings suggest variations across health condition types and gender. Relationship quality and caregiving are important contexts moderating the negative impact of spousal chronic illness on depression. Health care providers should be aware that spouses' health statuses are connected and that type of illness may affect the care context.

The Role of Information and Communication Technology in End-of-Life Planning Among a Sample of Canadian LGBT Older Adults.

To better understand the role of technology in later-life planning among older lesbian, gay, bisexual, and trans (LGBT) adults, we conducted focus groups to explore factors linked to diverse sexual orientations and gender identities. Twenty focus groups were facilitated across Canada with 93 participants aged 55 to 89. Constant comparative analysis yielded four categories: (a) fear, (b) individual benefits, (d) social elements, and (d) contextual elements. Fear related to technology and fear of end-of-life planning. Individual benefits referred to technology as a platform for developing LGBT identities and as a source of information for later-life planning. Social elements were establishment and maintenance of personal relationships and social support networks. Contextual elements referred to physical and situational barriers to technology use that limited access and usability. These findings can inform technological practice and services to enhance later-life planning.

End-of-Life Preparations Among LGBT Older Canadian Adults: The Missing Conversations.

LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups; 40 participants), lesbian/bisexual women (5 groups; 29 participants), and transgender persons (3 interviews, 4 groups; 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

BACKGROUND: Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? METHODS: Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s) to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s) for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s) in each participating workplace in order to determine: the degree of support for the intervention(s) (reflected in the workplace culture); how sex and gender are implicated; co-workers' responses to the chosen intervention(s), and; other nuances at play. It is hypothesized that the benefits of the caregiver-friendly workplace policy intervention(s) will include improvements in caregiver-employees' mental, psychosocial and physical health, as well as evidence of cost-benefit and cost-effectiveness for the employer. DISCUSSION: The expected project results will provide the research evidence for extensive knowledge translation work, to be carried out in collaboration with our knowledge transition partners, to the employer/human resources and occupational health/safety target populations. TRIAL REGISTRATION: ISRCTN16187974 Registered August 25, 2016.

The Impact of Eldercare on Adult Children's Health and Employment in Transitional China.

This paper explores the content and extent of the burden of caregiving for Chinese families in transition. It sets out to understand how Chinese families manage to balance family caregiving responsibilities with employment, the impact of the existing social institutions on family caregiving practices, and the risks that caregivers have to face. Data were collected from a sample of 214 workers from 14 manufacturing companies in an industrialized city in central China in 2013. Analysis revealed that common types of eldercare were assisting with activities of daily living and medical related care; middle aged employed respondents were most likely to be the caregivers to older family members; financial and time demands of care were challenging for caregivers, but women with more education and a secure job responded to the pressure of care giving better than those with less education and insecure jobs. An absence of workplace policies to support family caregivers was reported to create insecure employment conditions among middle aged workers. The findings imply an urgent need for legislative action and workplace policy that support family caregiving in China.

Translating Knowledge: Promoting Health Through Intergenerational Community Arts Programming.

INTRODUCTION: Intergenerational programs have been touted to address the generation gaps and isolation of older adults. Mutual contact alone has produced mixed results, but attention to the intergenerational program content demonstrates well-being benefits. This practice-based article examines the benefits of creating and performing ensemble-created plays to older adults' and university students' well-being and the key processes that promote well-being. METHOD: This community participatory research project involved older adults as researchers as well as research subjects. Individual semistructured interviews were conducted by two trained interviewers with older adults (n = 15) and university students (n = 17). RESULTS: Professional dramaturgical processes of storytelling, reminiscence, and playfulness were key elements in participants' generative learning. They augmented older adults' and university students' ability to understand their situations and try innovative solutions. Skills such as openness, flexibility, and adaptation transferred into students' and older adults' daily lives. CONCLUSION: Participating in this intergenerational theatre group reduced ageism and improved intergenerational relationships. It increased older adults' and university students' well-being by building social networks, confidence, and self-esteem and developed a sense of social justice, empathy, and support for others.

Determinants of Loneliness among Older Adults in Canada.

The purpose of this study was to determine the key determinants of loneliness of older Canadians. We drew on the assumptions concerning the importance of person-environment fit to test the relative importance of personal characteristics, deprived living conditions, social network/social engagement, and satisfaction in explaining loneliness. Data comprised a sample of 3,799 respondents over age 65 drawn from Statistics Canada's General Social Survey, Cycle 22. Personal characteristics, social network size and composition, and satisfaction with network contact were found to be related to loneliness, as were indicators of living in economically and socially challenging conditions. Older adults who had experienced a recent downturn in their financial situation, and who lacked the help needed to cope with a recent personal challenge, reported higher levels of loneliness. A striking feature of our findings is the relatively low scores on loneliness of older Canadians compared to older adults in other countries.

Determinants of health-service use by low-income people.

Poverty influences health status, life expectancy, health behaviours, and use of health services. This study examined factors influencing the use of health-related services by people living in poverty. In the first phase, 199 impoverished users of health-related services in 2 large Canadian cities were interviewed by their peers. In the second phase, group interviews with people living in poverty (n = 52) were conducted. Data were analyzed using thematic content analysis. Diverse health-related services were used to meet basic and health needs, to maintain human contact, and to cope with life's challenges. Use of services depended on proximity, affordability, convenience, information, and providers' attitudes and behaviours. Use was impeded by inequities based on income status. To promote the health of people living in poverty, nurses and other health professionals can enhance the accessibility and quality of services, improve their interactions with people living in poverty, provide information about available programs, offer coordinated community-based services, collaborate with other sectors, and advocate for more equitable services and policies.

Characteristics of family/friend care networks of frail seniors.

This paper tests assumptions often made by policy makers and practitioners that networks of family, friends, and neighbours are able to provide sustained care to frail elderly Canadians. Using national survey data, we examined characteristics of the care networks of 1,104 seniors living with a long-term health problem. Care networks were found to vary considerably in size, relationship composition, gender composition, age composition, and proximity, and these network characteristics were found to help explain variations in the types and amounts of care received. As a result, network characteristics that might place seniors at risk of receiving inadequate care (including small size and higher proportions of non-kin, male, and geographically distant members) were identified. These risk factors appear to be poorly reflected in most existing policy.

Evaluating consumer satisfaction in residential continuing care settings.

The outcome of the project reported on here is a client-centered consumer satisfaction questionnaire designed to evaluate new models of residential continuing care in Alberta, Canada. Satisfaction is defined as a multi-dimensional construct that is grounded in the consumer's experience. Consultation with the clients of the services during development of the instrument ensured that characteristics important to the clients were assessed. The result is an instrument with which to measure satisfaction that is fully client-centered and that, with appropriate modifications, can be used to monitor any client-centered program for cognitively-able continuing care clients.