Association of formal and informal care with health-related quality of life and depressive symptoms: findings from the Caring for Adults Recovering from the Effects of Stroke study

Aim: To investigate the association between informal and formal care and stroke participants’ self-reported health-related quality of life and depressive symptoms one year after the stroke event. Methods: We examined a national population-based sample of 123 stroke participants. Care received was defined as formal (outpatient therapy, care from home health aides, nurses, or therapists), informal (family caregiver), or shared (formal and informal). Hours of care were extracted from Medicare claims and caregiver self-report. A general linear model was used to compare health-related quality of life and depressive symptoms one year after the stroke for those who received shared care, only informal care or only formal care to those with no post-stroke care. Results: Among stroke participants, 12.2% received only formal care, 35.0% only informal care, 38.2% shared care, and 14.6% no care. Those with only informal care had greater self-reported depressive symptoms than those who received no care at all. Conclusions: Shared care was the most common care configuration for stroke participants, but no significant associations were found between shared care and self-reported outcomes after adjusting for stroke participant characteristics. Further research is needed on the dose of informal and formal care and their coordination to better understand relationships with recovery.IMPLICATIONS FOR REHABILITATION Stroke is one of the leading causes of disability for adults in the USA and ongoing care is needed for survivors. Informal caregivers such as family members play an important role in recovery in addition to formal care provided by home health aides, nurses and therapists. This study showed that survivors with informal care had more severe depressive symptoms, while shared care provided by formal and informal caregivers may prevent further decline in patients with worse baseline health.