Objective:

We utilized a human-centered design process to generate ideas for future stroke rehabilitation service delivery in community settings in Zambia. 

Background:

Stroke is a leading cause of disability in Zambia, yet rehabilitation services are lacking throughout most of the country, making recovery from stroke-related disability and reintegration into society a challenge. Little research has been performed on optimally supporting patients with stroke post hospital discharge.

Design/Methods:

We led two co-creation workshops for adults with stroke and caregivers of individuals with stroke  in Zambia. The workshops included facilitator-led participatory activities (e.g. term association games, journey mapping) to evaluate participant perceptions of seven potential community stroke rehabilitation services: physical therapy, speech therapy, occupational therapy, pastoral support, social services support, employment training, and mental health counseling. Rapid thematic analysis of audio-recorded outputs and facilitator discussion guides was performed to identify key themes. 

Results:

Thirty-six people participated (18 patients, 18 caregivers). Through term association, participants identified speech therapy, physical therapy, mental health counseling, and occupational therapy as empowering activities. Participants were unsure of what employment retraining and social support services would include and displayed skepticism towards pastoral support due to fear of having a corrupt pastor. Journey mapping across all rehabilitation services revealed key themes, including: (1) initial resistance to seeking help, (2) pursuit of outside support due to loneliness at home or helplessness in supporting family, (3) importance of a health care provider initially recommending the service, (4) financial challenges with cost of and transportation to services, (5) desire for caregivers to receive training to provide services at home. 

Conclusions:

This co-creation workshop reveals important practical considerations of piloting new stroke rehabilitation services in local communities across Zambia. Future efforts to improve stroke rehabilitation should include developing integrative local stroke rehabilitation centers where all services can be delivered and piloting caregiver training programs for in-home rehabilitation services.