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

Abstract

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.

Keywords:

• Stroke
• caregivers
• rehabilitation
• Medicare
• depression
• quality of life

Acknowledgements

The authors thank the other investigators, the staff, and the participants of the Caring for Adults Recovering from the Effects of Stroke study and the REasons for Geographic and Racial Differences in Stroke study for their valuable contributions. A full list of participating REasons for Geographic and Racial Differences in Stroke investigators and institutions can be found at www.regardsstudy.org.

Disclosure statement

The authors report no conflicts of interest.

Data availability

The data that support the findings of this study are available on request from the REasons for Geographic and Racial Differences in Stroke executive committee. The data are not publicly available due to their containing information that could compromise the privacy of research participants.

Additional information

Funding

This research project is supported by a Cooperative Agreement U01 NS041588 from the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, Department of Health and Human Service. Additional funding for the Caring for Adults Recovering from the Effects of Stroke project was provided by an Investigator-Initiated Grant (R01 NS075047) from NINDS. Additional funding was provided by Duke University.