Understand how people evaluate their post-stroke physical, psychosocial, occupational, and mental health.
Despite advancements in in-hospital outcomes for people with stroke in Zambia, post-discharge outcomes remain poor. Through understanding patient perspectives, post-discharge services can be optimized to improve post-discharge stroke outcomes.
Adults at least three months outside stroke onset and their caregivers were recruited for focus group discussions from the outpatient neurology clinic at the University Teaching Hospital, Zambia, for this study. Two members of the research team led each focus group using a semi-structured interview guide. Discussions were held in English, Bemba, and/or Nyanja based on patient preference. Transcripts from the focus group were recorded verbatim, translated, and coded for themes related to participants’ perception of physical wellness, mental health, occupational health, personal livelihood, and community integration.
Overall, three patient focus groups (n= 16) and two caregiver focus groups (n= 9) were conducted. Key themes emerging from patient focus groups included: 1) reduction in social networks, leading to mental health challenges among women participants and financial stress among male participants, 2) stigmatization of patients in church leading to religious self-isolation, and 3) an inability to return to the workforce following stroke. Key themes from caregiver focus group included: 1) experience of involuntary isolation of from family activities due to uncertainty of the patient’s condition, 2) loss of financial support from extended family and community, particularly more than a year after a patient’s stroke, and 3) challenges with bringing patients to rehabilitation centers and the hospital due to accessibility issues.
Post-discharge functional limitations after stroke in Zambia are not limited to the physical domain. In order to optimize post-discharge outcomes in patients with stroke, a multi-disciplinary approach is necessary and ought to include mental health services, pastoral support, occupational health training, and family education on stroke recovery and resources.