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.

Participation after a stroke: changes over time as a function of cognitive deficits.

Participation refers to the engagement of a person in daily activities and social roles. The goal of this study was to compare changes in older adults' participation over time following a stroke as a function of the presence of deficits in memory, visual perception, executive functions, visual attention or language. A total of 197 persons with stroke were assessed 3 weeks, 3 months and 6 months after discharge from an acute care hospital, rehabilitation unit or geriatric day hospital. The Assessment of Life Habits (ALH) was used to measure participation. Neuropsychological measures were used to assess the presence of a cognitive deficit in the domains of memory, visual perception, executive functions (inhibition), visual attention and language. Overall, results indicate that participation after a stroke improves over time after hospital discharge in spite of cognitive deficits. Changes in participation over time differed between unimpaired and impaired participants only for language and executive deficits in three domains: interpersonal relationships, community life and responsibilities. These results indicate that when returning to the community after a stroke, positive changes in participation over time are possible even with cognitive deficits.

Effects of an adapted leisure education program as a means of support for caregivers of people with dementia.

The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n=49) aims to evaluate the impact of this program on caregivers' well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n=10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden.

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.

[Development of an adapted leisure education program for persons with dementia]. / Développement d'un programme d'éducation au loisir adapté comme moyen de soutien à l'implication d'aidants d'un proche atteint de démence.

Leisure represents a positive way to keep relationships satisfactory between caregivers and a person with dementia. Adapted leisure education is a promising approach to assist the family to discover new ways to share good times with their relatives. This study aimed to develop an adapted leisure education program. It included an evaluation of the caregivers' needs, the program content development, and a pilot study to experiment with the content of the program. Three focus groups of dementia caregivers (n = 19) were conducted to investigate caregivers needs. Based on content analysis of these focus groups and a literature review, the content of the program was developed. The pilot study (n = 4) included a quasi-experimental trial and an implementation evaluation. This study led to the development of an adapted leisure education program that puts caregiver support in a new perspective, focusing on positive aspects rather than the burden of caregiving.

[Validation of a tool for family caregivers]. / Validation d'un outil pour les proches-aidants.

The purpose of this transcultural study was to translate and adapt for the province of Quebec (Canada) a tool for assessing the support needs of family caregivers of aging persons, as well as to validate the relevance and feasibility of its utilization in Quebec homecare services. Developed jointly in the United Kingdom and Sweden and based on a caregiver-service provider partnership process, the Carers Outcome Agreement Tool (COAT) is presently the focus of a large-scale implementation study in Sweden. Following parallel back-translation and adaptation, the tool, entitled Entente sur le Soutien aux Proches-Aidants (ESPA) in French, was validated in terms of relevance and feasibility via focus groups with service providers and interviews with family caregivers. Results show the ESPA to be a culturally sensitive tool that systematically identifies the support needs of caregivers and indicates the type of help best suited to meet these needs. As with other European studies, the results suggest that the caregiver role comprises a common core of needs and highlights the tool's potential for transfer to the cultural context of French-speaking Europe.

Is there agreement between Canadian older adults and their primary informal caregivers on behaviour towards institutionalisation?

We aimed to compare behaviour towards institutionalisation between frail older adults and their informal caregivers, and identify correlates of differential behaviour. In 2004, during the fourth wave of the longitudinal Program of Research to Integrate Services for the Maintenance of Autonomy (PRISMA) study (province of Québec, Canada), 86.7% of eligible dyads, that is 593 participants and their primary informal caregivers, were asked separately if they thought about placement, discussed it with someone or visited an institution during the previous year. An ordinal measure of behaviour towards institutional placement was derived and agreement between dyad members was assessed with the weighted kappa. Although identical behaviour was relatively high (65.4%), it represented almost exclusively no thoughts by either member and the weighted kappa was low (0.16). Differential behaviour was then analysed as a three-level dependent variable (thoughts only by the care-receiver, thoughts only by the caregiver, no thoughts by either dyad member) in a multiple multinomial logistic regression analysis. Compared with neither person thinking about it, the care-receiver alone thinking about placement was associated with using voluntary services, receiving help for home maintenance and visits to the emergency room during the previous year, along with the caregiver being aged 70 years or over. Compared with neither person thinking about it, the caregiver alone thinking about placement was associated with being male, not residing with the care-receiver, sensing a higher subjective burden, along with the care-receiver being 85 years or older, not being able to feed him/herself independently and visits to the emergency room during the previous year. Identified correlates can be useful in targeting dyads likely to behave differently. Communication within these dyads needs to be enhanced, as it is crucial to ensure that both parties are comfortable with possible future institutionalisation. In this regard, health professionals could play a role in bringing the issue to discussion.

Correlates of the perceived need for institutionalisation among older adults without cognitive impairment.

BACKGROUND: While many studies investigate the factors that influence the institutionalisation of older persons, only a few consider one of its most important predictors, namely, the perceived need for institutionalisation. Also referred to as 'desire for institutionalisation', it has mainly been investigated for informal caregivers of older adults suffering from dementia. Not many studies target caregivers of people without dementia; even fewer have been interested in the older adult's own perceived need. OBJECTIVE: To measure the prevalence and identify the correlates of the perceived need for institutionalisation among community-dwelling older adults without cognitive impairment. METHODS: During the fourth wave of the longitudinal PRISMA study, cognitive-impairment-free participants (78 years or older and at risk of functional decline) were presented with three questions assessing their perceived need for institutionalisation. Correlates were identified through multivariable logistic regression analyses. Analyses were conducted separately for two types of home living arrangements: individual and collective dwellings. RESULTS: 27% of the older adults at least thought about institutionalisation, irrespective of their current living arrangements. For homeowners/tenants, age ranging from 80 to 85, transfer and vision problems, the absence or advanced age of the informal caregiver, and the use of the ER or help for home maintenance during the past year led them to think about institutionalisation. Seniors living in collective dwellings think about institutionalisation after experiencing a recent highly significant functional decline, when feeling that their current environment fails to meet needs, and after requiring the use of voluntary services during the past year. CONCLUSIONS: The percentage of community-dwelling older adults considering institutionalisation is the same for people currently in individual or collective settings. Factors related to physical disabilities and insufficiencies of resources are important correlates, with specific factors differing between the two types of current living arrangements.

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.

Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers.

The decision to move a family member with dementia to a nursing home is a difficult experience for caregivers. Complex psychosocial factors are involved and knowledge of predictive factors alone is insufficient. Using grounded theory, this study explores the decision-making process with regards to institutionalization, from the perspective of family caregivers. Fourteen people who moved a relative to long-term care in the preceding 6 months were interviewed. Data analysis using comparative analysis and line-by-line dimensional analysis was used to develop a theoretical model of the decision-making process. Three factors within the model were central to the process: (a) caregivers' perceptions of their ability to provide care, (b) caregivers' evaluations of their relatives' ability to make care decisions, and (c) the evolving influence of contextual factors and interactions with healthcare professionals. The contribution of these findings to new conceptualizations of institutionalization is discussed.

Older husbands as caregivers of their wives: a descriptive study of the context and relational aspects of care.

The purpose of this study was to describe the context and relational aspects that characterize male caregiving. The sample comprised 323 older husbands caring for their wives in Quebec (Canada). Nearly 60% of them spent at least 84 h/week caregiving and about 40% regularly performed personal care and instrumental tasks. Family provided emotional support above all and service utilization was limited for certain services. Husbands perceived relational deprivation but also personal gain relative to their role. Conflicts seldom occurred with family members. Comparisons between husbands of wives with and without memory problems revealed selected differences on context and relational variables. This study contributes to knowledge on male caregivers and provides directions for nursing practice and research.

Deciding whether to continue, share, or relinquish caregiving: caregiver views.

Using grounded theory, the authors explore informal caregiving and develop the beginnings of a substantive caregiving theory explaining some of the decision making involved in providing care to an older family member. Sixteen caregivers (CGs) participated in the study. Line-by-line and dimensional analyses reveal various purposes of caregiving for an older family member. These purposes influence whether and how CGs continue to provide the care or decide to share or relinquish caregiving to health care providers. This study suggests that a broader conceptualization of caregiving is needed to illuminate fully the complexity involved in providing care to older adults.