A systematic review of qualitative studies from several countries showed stroke survivors and their caregivers often feel neglected by primary care and community healthcare services, frustrated by a lack of follow-up and ill-prepared to manage recovery on their own.

“Primary care and community health care interventions which focus on improving active follow-up and information provision to patients and caregivers especially in the first year after stroke could help improve patient self-management, increase stroke specific health literacy and thus mitigate the current perceptions of abandonment felt by many stroke survivors and their caregivers,” wrote senior author Jonathan Mant, MD, a professor of primary care research at the University of Cambridge in the U.K., and colleagues.

The analysis, which was published online in PLOS One, pulled responses from 51 studies including 168 stroke survivors and 328 informal caregivers. Defined as a “meta-ethnography,” it incorporated studies from the U.K., North America, Australia, Scandinavia and Iran.

Other complaints highlighted by the authors included long wait time for rehabilitation—which some caregivers perceived as making the patient’s condition deteriorate—and struggles in accessing credible, appropriate information regarding stroke self-care. Younger survivors also wished there was more vocational support for returning to work, “contributing to their financial hardship, disappointment, and feelings of loss,” the authors noted.

The authors said the emotional support element proved important to both survivors and caregivers. The latter group, in particular, felt unprepared and pressured to “become experts” in stroke care, Mant et al. wrote.

“The need for training was repeatedly emphasized. Caregivers wanted insights into how to cope, how to get organized and establish a routine after discharge. Many also wanted back-up and respite services. Lack of support was highlighted as a barrier to undertaking and/or continuing the caregiving role.”

Stroke is the second-leading cause of death globally and stroke-related disability has risen 12 percent worldwide since 1990. It costs the U.S. $33 billion per year including healthcare costs, medicines and missed days of work, according to a press release.

Due to these realities, and substantiated by their study findings, the authors suggested further efforts to help patients and caregivers successfully transition to post-acute care.

"We need mechanisms to encourage better communication and collaboration between generalist services, which tend to provide the longer-term care after stroke, and specialist services, which provide the care in the immediate phase post-stroke,” study coauthor Lisa Lim, PhD, said in the release. "Giving the right information at the right time will help stroke survivors and their caregivers become more self-reliant over time and better able to self-manage living with stroke.”