A systematic review of studies, published in PLOS ONEfocused on stroke survivors' and carers' experiences of primary care and community healthcare services has found that they feel abandoned because they have become marginalized by services and do not have the knowledge or skills to re-engage.

The study led from the University of Cambridge, suggests that primary care and community healthcare 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 and increase stroke-specific health literacy.

Primary care could play an important role in the care of stroke survivors and their caregivers, supporting access to community services and facilitating transfer back to specialist services when new problems emerge. However, the feeling of abandonment that people with stroke experience following hospital discharge suggest this role is not being fulfilled.

To better understand the possible reasons behind this feeling of abandonment, a team at Cambridge's Department of Public Health and Primary Care carried out a systematic review of the qualitative evidence in the field. In total, they analyzed 51 studies (encompassing 566 stroke survivors and 593 caregivers).

The analysis found an unaddressed need for continued support in a quarter of studies. Survivors and caregivers felt frustrated and dissatisfied with a lack of proactive follow-up either from primary care, the hospital, or allied healthcare professionals. They felt ill-prepared and pressured to "become experts" in caring for stroke survivors. In addition, both survivors and caregivers felt emotional support was lacking.

More than 40% of studies highlighted gaps in information provision. A quarter (23%) of the studies highlighted inadequate information on stroke, its consequences, and recovery. Lack of information led to unrealistic expectations of "getting back to normal", leading to disappointment and tensions between the survivor and caregiver.

Ineffective communication between survivors, caregivers and healthcare services as well as within healthcare services resulted in feelings of frustration and having "to battle the system". Gaps in the transfer of knowledge within the healthcare system and the use of medical jargon sometimes caused confusion and were construed as indifference to survivors' needs.

The study found that that many stroke survivors and caregivers felt marginalized due to the misalignment between how health care access in primary care is organized and survivors' and caregivers' competencies. For example, individuals felt that in order to access services they needed an awareness of what services are available, plus the ability to communicate effectively with healthcare professionals. 

"Stroke survivors and their caregivers can feel abandoned because they struggle to access the appropriate health services, leading to marginalization," says Dr Lisa Lim, one of the study authors. "This arises because of a number of factors, including lack of continuity of care, limited and delayed access to community services, and inadequate information about stroke, recovery and healthcare services.

The researchers argue that providing support from healthcare professionals within the first year after stroke would increase patients' ability to self-manage their chronic condition. This can be achieved by providing timely and targeted information about stroke, available resources, and by regular follow-ups to foster supporting long-term relationships with healthcare professionals.

The team identified two key areas of improvement to address patients' and caregivers' marginalization: increasing stroke-specific health literacy by targeted and timely information provision, and improving continuity of care and providing better access to community healthcare services.