Chantal D. Caron

Development of a conceptual framework of positive aspects of caregiving in dementia

Research on family caregivers usually focuses more on stress and burden, especially in the context of looking after a person with dementia. This leads to fewer considerations of positive aspects of caregiving. Thus enhancing these positive aspects represents an innovative approach to caregivers’ support. Furthermore, these aspects need more conceptualization to underpin the development of such an approach. This article proposes a conceptual framework of the positive aspects of caregiving based on an integrative literature review. This conceptual framework provides a comprehensive model that should improve understanding of positive aspects of caregiving. It could also contribute to the development of innovative support programs based on the positive aspects instead of the negative aspects of caregiving.

Decision Making at the End of Life in Dementia: How Family Caregivers Perceive Their Interactions With Health Care Providers in Long-Term-Care Settings

Makingend-of-lifecare decisions in the context of dementiais complex. As people with advanced dementia are in capable of deciding about their own care, family caregivers often become involved with health care providers in the decision-making process to ensure the best care for their loved one. Using a grounded theory approach, the experience of family caregivers in making such end-of-life care decisions was explored. Twenty-four caregivers were interviewed. The results show that caregivers evoke five dimensions when considering these decisions. One dimension, the relationship with health care providers, emerged as vital to their experience. Four elements of this relationship are presented in this article: quality of the relationship, frequency of contact, congruence of their values and beliefs with those of health care providers, and the level of trust. In an era that promotes partnership with families in long-term-care settings, care standards are needed in order to guarantee family participation in achieving quality dementia care.

End-of-life decision making in dementia The perspective of family caregivers

Family caregivers are often required to make treatment decisions on behalf of institutionalized loved ones with advanced-stage dementia. Deciding on appropriate treatment is a complex process which can be difficult for families. This grounded theory study examined the concerns of family caregivers regarding their relative’s care and explored how end-of-life treatment decisions are made. Data were collected from in-depth interviews with 24 caregivers and analysed using constant comparison and dimensional analysis, resulting in a substantive theory of decision making. The role of decision maker from the perspective of family caregivers is described. The relative’s level of quality of life emerged as central to decision making. Four end-of-life phases were identified in which treatment intensity was influenced by the caregivers’ evaluation of quality of life. The results highlight the importance of including family caregivers’ experiences in working toward caregiver/medical team consensus around treatment decisions at the end of life in dementia.

Defining Spirituality and Giving Meaning to Occupation: The Perspective of Community-Dwelling Older Adults with Autonomy Loss

Background. In the Canadian Model of Occupational Performance, meaningful occupation involves interaction between spirituality and environment. However little research exists on the process of giving meaning to occupation. Purpose. This study explored both meaningful occupation and the definition of spirituality from the perspective of community-dwelling older adults with autonomy loss. Method. Using a qualitative approach, grounded theory method of Glaser and Strauss (1967), eight cognitively intact persons were interviewed individually. Results. The process of giving meaning to occupation involves an intrinsic link between identity and meaningful occupation, with identity being central to the person. Following autonomy loss, a process of adjusting identity, involving social, psychological and spiritual aspects, occurs over time. Spirituality is defined in terms of its close links to religion and belief in a benevolent greater power. Implications of Research. This study contributes to the discussion of the concepts of spirituality, identity and meaning in occupational therapy.

Development of an Intervention Program for Alzheimer's Family Caregivers Following Diagnostic Disclosure:

The purpose of this qualitative study was to develop a pro-active psycho-educational intervention program for Alzheimers family caregivers following diagnostic disclosure. Based on a theoretical model of role transitions and a participatory approach, the study comprised four steps: (a) exploring caregiver needs; (b) developing and validating a program proposal based on caregiver-expressed needs; (c) formalizing program through intervention mapping; and (d) testing and qualitatively evaluating the program. The psycho-educational program consisted of seven individual sessions aimed at fostering knowledge and skills required to ensure successful transition to the caregiver role. The approach used in this study can serve as a guide for the development of nursing intervention programs. Intervention mapping allowed, in particular, integrating theoretical and empirical elements in a formal intervention model.

A partnership approach to service needs assessment with family caregivers of an aging relative living at home: A qualitative analysis of the experiences of caregivers and practitioners

BACKGROUND As the global population ages, support for family caregivers who provide the bulk of care to community-dwelling older people is becoming ever more important. However, in many countries, homecare-service practitioners currently do not follow a systematic approach to assessing and responding to caregiver needs. OBJECTIVES The aim of this study was to explore the experiences of caregivers and practitioners who took part in a field test of the Family Caregivers Support Agreement (FCSA) tool, a modified version of the Carers Outcome Agreement Tool (COAT) initially developed as the result of an Anglo-Swedish study. Both the COAT and the FCSA are designed to facilitate partnerships between caregivers and practitioners so that needs assessment and subsequent support services are negotiated and agreed so as to meet caregiver expectations. DESIGN AND PARTICIPANTS A qualitative design was adopted and data were collected through focus groups with six practitioners (nurses and social workers) working in two Local Community Service Centres in the province of Quebec (Canada). These practitioners had previously completed the FCSA tool with 17 primary caregivers of frail elderly relatives who were clients of homecare services. Individual interviews were conducted with the caregivers to explore their experiences. Data were analyzed to identify significant themes, from the perspectives of caregivers and practitioners, which provided insights into their experiences and the strategies used by practitioners to facilitate partnership working. FINDINGS To facilitate meaningful exchanges, practitioners adopted strategies such as sensitive listening and the use of enabling questions to identify and contextualize caregiver needs and to highlight the ability of caregivers to find their own creative solutions to the challenges they face. The caregivers described experiencing a climate of trust that allowed them to express their concerns, to reflect upon their situation and to participate in the development of an action plan for their support. CONCLUSIONS The study reaffirms findings from Sweden and UK that the use of a tool such as the FCSA enhances partnership working and creates a caregiver-practitioner relationship based on a genuine alliance. As a result, both parties gain new insights into the caring situation. The approach underpinning the FCSA tool has potential for a more widespread application in different contexts.

Older Husbands as Caregivers Factors Associated With Health and the Intention to End Home Caregiving

The purpose of this study, based on Pearlin et al.s model, was to determine the factors associated with the health of older husband caregivers and with their intention to end home caregiving for their wives. The results showed subjective stressors to be associated with outcomes. Role overload was linked to psychological distress and to lower self-perceived health, whereas role captivity was associated with psychological distress and the intention to end home caregiving. The likelihood of ceasing home caregiving increased when caregivers reported high relational deprivation. A high percentage of the variance in psychological distress was explained (51%). The quality of prior husband-wife relationships, the frequency of disruptive behaviors, family conflicts, and self-efficacy were associated with this variable. Selfefficacy had a mediating effect between subjective stressors and psychological distress, whereas the number of services received had a moderating effect on the intention to end home caregiving among husbands with high role captivity. This study provides avenues for interventions sensitive to male caregivers.

Leisure activities following a lower limb amputation

Purpose. The aim of this study was to describe leisure activities, leisure satisfaction and constraints on participation in leisure following a unilateral lower limb amputation due to vascular disease. Method. This study used a mixed-method approach where 15 individuals with lower limb amputation completed the individual leisure profile 2–3 months post-discharge from rehabilitation. A subsample (n = 8) also participated in semi-structured interviews analysed using the Miles and Huberman analytic method. Results. Results show that participants were involved in 12 different leisure activities on average. Compared to before the amputation, a decrease in participation was observed in all categories of leisure activity, and especially crafts, nature and outdoor activities, mechanics, sports and physical activities. Nonetheless, overall satisfaction was high. The most important constraints on participation in leisure were lack of accessibility, material considerations, functional abilities, affective constraints and social constraints. Conclusion. A decrease in leisure activity participation and the presence of constraints do not automatically translate into low levels of leisure satisfaction.

Differences in Participation According to Specific Cognitive Deficits Following a Stroke

This study compared participation following a stroke according to the presence of specific cognitive deficits. Participation is defined as the involvement of a person in daily activities and social roles. Three weeks after being discharged home, 197 older adults (aged 65 years and older) who had a stroke were evaluated using the Assessment of Life Habits, which includes 12 domains of daily activities and social roles. The presence of a cognitive deficit was determined by the scores obtained on tests assessing memory, visual perception, language, unilateral attention, and the inhibition component of executive functions. After adjusting for depressive symptoms, time since stroke, and comorbidities, five of the domains of participation are significantly more restricted by some cognitive deficits. Memory deficits affect the communication (p = .006) and leisure (p = .032) domains. In the presence of visual perception deficits, the nutrition (p = .019), communication (p = .004), and responsibilities (p < .0005) domains are more limited. Language deficits have an impact on several domains of participation, namely communication (p < .0005), responsibilities (p < .0005), community life (p = .001), and leisure (p = .021). Unilateral neglect and deficits in the inhibition component of executive functions are not found to restrict participation. Overall, participation after stroke is related to cognitive function. Looking carefully at individual domains of activities and roles provides essential information in guiding rehabilitation interventions aimed at enhancing participation after discharge.

Cognitive appraisal and perceived benefits of dysvascular lower limb amputation: a longitudinal study.

This study aimed to: (i) compare the adjustment of individuals who have a positive appraisal of their amputation with those who have a negative appraisal; and (ii) identify the perceived benefits of amputation. Sixteen individuals who had a lower limb amputation (nine men and seven women) completed questionnaires during hospitalization (T1), rehabilitation (T2) and after discharge (T3). A subsample (n=10) also participated in semi-structured interviews. Participants who had a positive appraisal of their amputation showed greater functional independence (T1) and greater body image satisfaction (T3) than those with negative appraisal. From interviews, the perceived benefits identified were less pain, more social contacts, fewer health concerns and fewer demands from family and friends. Positive appraisal of the amputation is experienced by many people, thus requiring more attention in future research.