The experience of partners of young stroke survivors

A large proportion of disabled stroke survivors live at home and are supported by informal caregivers. Identification of determinants of caregiver burden will help to target caregiver interventions. Data on patient, caregiver, and health and social support characteristics were collected prospectively over 1 year in 232 stroke survivors in a randomized trial of caregiver training. The contribution of these variables to caregiver burden score (CBS) and quality of life (QOL) measures at 3 months and 1 year was analyzed using regression models. Stroke patients had a mean age of 74+/-11 years, and 120 (52%) were men. The mean age of caregivers was 65.7+/-12.5 years, 149 (64%) were females, and 116 (50%) had received caregiver training. The mean CBS was 48+/-13 and 38+/-11 (score range of bad to good 88 to 22) and QOL score was 75+/-16 and 75+/-15 (score range of bad to good 0 to 100) at 3 months and 1 year, respectively. CBS and QOL correlated with each other and with patient (age, dependency, and mood), caregiver (age, gender, mood, and training), and support (social services and family networks) variables. Of these, only patient and caregiver emotional status, caregiver age and gender, and participation in caregiver training were independent predictors of either outcome at 3 months. Patient dependency and family support were additional independent predictors at 1 year. Social services support predicted institutionalization but not caregiver outcomes. Advancing age and anxiety in patients and caregivers, high dependency, and poor family support identify caregivers at risk of adverse outcomes, which may be reduced by caregiver training.

The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.

Most stroke-related studies have consisted of people over the age of 65. This study examined the unmet needs of young people with stroke, living in community housing in the UK. People with a stroke (>1 year ago), in two age bands (18-45; 46-65) were sent the Southampton Needs Assessment Questionnaire for people with Stroke. 315 out of 639 (49%) questionnaires were returned (mean age 55, SD 9; 189 males, 126 females). The median number of unmet needs reported was two (IQR 0-6). The most frequently reported unmet needs were: provision of information about the responders' stroke (45%); assistance with finances (24%); non-care activities (19%); and intellectual fulfillment (17%). Responders in the younger age group reported significantly more unmet needs than responders in the older age group (for a holiday, intellectual fulfillment and family support). Responders with poor mobility reported significantly more unmet needs than responders with average and good mobility for 15 unmet needs (three most pressing: respite care/short breaks; adaptations; and access to community environment). Responders who did not return to work reported significantly more unmet needs than responders who had reduced hours or changed jobs and people who returned to the same job with the same hours for seven unmet needs (three most pressing: help with finances; a holiday and speech therapy). People of younger age, with poorer mobility and those unable to return to work, report most unmet needs. Further work needs to be done within the community, with employers and professionals, in relation to education and the provision of specifically targeted information in order to facilitate participation and autonomy for people with stroke.