"I Just Felt like We Fell Off the Planet”- Patient and Caregiver Perceptions of Transitioning Home after an Acute Stroke

Background and Purpose: Transitions in health care are characterized as times of high risk for people with complex health conditions such as stroke.  However, much of the national conversation related to care transitions focuses on cost factors, particularly hospital readmission.  There is a growing body of evidence that psychosocial barriers are responsible for the majority of transition breakdowns leading to re-admission. The aim of this study was to understand how patients and caregivers define transition challenges after an acute stroke. In addition, we explored the psychosocial challenges associated with their transition from the hospital or rehabilitation center back to their homes.

Methods- This cross sectional study utilized focus groups to collect data from participants. Purposive sampling was utilized to recruit patients from the stroke services at four hospitals. Patients were eligible to participate if they had been hospitalized for an acute stroke in the previous 3 months, had some functional impairment, were discharged to home, and were able to communicate in English. After patients were identified their caregivers were asked to participate in the study as well.  Focus groups included twenty-one participants (13 patients and 8 caregivers). All caregiving dyads were heterosexual married spouses; patients had a range of disability levels and residual effects of stroke. The groups were recorded and transcribed verbatim. In addition, an observer recorded notes on non-verbal group interactions. Two coders reviewed the transcripts following thematic analysis. Major themes identified by the researchers were then presented to the focus group members for feedback and discussion. 

Findings- The transition home after a stroke is a time of confusion, loss, and upheaval. Patients and caregivers feel unprepared despite education given while in the hospital. Their information needs exceeded that which was provided, particularly in their need for personalized information. Fear of recurrence and stroke prevention were primary concerns for all focus group participants. For many this was their first experience trying to access multiple health care services and coordination was a challenge. More information regarding challenges to anticipate once home was desired by both caregivers and patients. Couples faced multiple unanticipated psychosocial challenges, such as: loss of support, role confusion, and labile emotions. The focus group experiences themselves were seen as therapeutic, providing some normalization and opportunities to gain support from others in similar situations.

Discussion and Implications: These findings support the need for expanded services in the critical post discharge transition of stroke patients. Patients and caregivers could benefit from more intensive services at this time to improve recovery and prevent confusion and stress. Brief social work interventions that are aligned with patient and caregiver information, support, and psychosocial needs could ameliorate the experience of this as a crisis. The Affordable Care Act is challenging health care providers to reduce readmissions, creating a clear opportunity for social work interventions that support families and individuals throughout a health care transition. Social workers can be key players in transitions, not only in providing direct care but also in advocacy for more support at this crucial time.