Aims To explore the potential influence of the Stanford Chronic Disease Self-Management Program (CDSMP) on social support in Parkinson disease (PD). Methods This was a quasi-experimental mixed methods design. Volunteers with PD (n=27) and care partners (n=6) completed the CDSMP, questionnaires of social support and self-management outcomes, and an interview about social support in relation to CDSMP participation. PD participants (n=19) who did not participate in the CDSMP completed the questionnaires for quantitative comparison purposes. Results Regarding the quantitative data, there were no significant effects of CDSMP participation on social support questionnaire scores; however, there were some positive correlations between changes in social support and changes in self-management outcomes from pre- to post-CDSMP participation. Three qualitative themes emerged from the interviews: lack of perceived change in amount and quality of social support, positive impact on existing social networks, and benefit from participating in a supportive PD community. Conclusions Although participants did not acknowledge major changes in social support, there were some social support-related benefits of CDSMP participation for PD participants and care partners. These findings provide a starting point for more in-depth studies of social support and self-management in this population.

Stroke is a leading cause of serious long-term disability worldwide, with a dramatic impact not only on survivors but also on their families (Legg et al 2007, Simon et al 2009). Survivors of stroke are often discharged home, where family members help them to manage sensorimotor, cognitive, psychological and communication impairments that affect everyday life (Legg et al 2007, Greenwood et al 2009, King et al 2010). The high prevalence and extensive effects of stroke can have an impact upon the entire family, demanding that more attention be given to the family members who will be involved in helping the survivors when they return home (Gaugler 2010). Caregiving has a variety of effects on the family. Although some studies find that family carers experience rewards and fulfilment from their caregiving role (

This study adapted the Stress Process Model with occupational assessments to identify stress, leisure changes, burden levels, and health-related quality of life in 20 caregivers of working-age husbands with mild to moderate stroke in the past 2 years. Primary stress was based on participants' perceptions of their husbands' functional behavior skills. Secondary strain was indicated by reduction of leisure activities that the caregivers wished to still do or do more-a phenomena labeled Leisure Loss. Outcomes were burden and health-related quality of life. Wives whose husbands had more functional behavior difficulties experienced significantly more Leisure Loss. Wives with Leisure Loss had significantly higher burden scores than those who continued their leisure participation, but health-related quality of life scores were not different. These findings suggest that leisure participation is important as health promotion for family caregivers, with potential to enhance health of the relative with stroke and the entire family.

Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation. Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview. Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity. Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.

No abstract