Challenges and patient strategies in seeking health services for chronic stroke: A qualitative study

Abstract

Objective: Previous healthcare informatics research identifies a critical need for information technologies to support the selfmanagement of chronic illness by patients and caregivers. However, little is known about their experiences and challenges in seeking health services.Methods: We present a qualitative study with chronic stroke patients and their caregivers. Among them the 13 patients who participated in the study, 9 patients also participated together with a caregiver, who played a major role in helping the patients seek health services and the other 4 stroke patients, who dealt with stroke management independently, participated in the study by themselves. We used a grounded theory approach to analyze the interview data.Results: Our findings revealed three main barriers that stroke patients and their caregivers faced in utilizing affordable, accessible, and satisfactory health services and the corresponding strategies they adopted to cope with these challenges.Conclusions: We discussed that these strategies reflect patients’ creative appropriation in making services affordable and could inform technology design that builds around patients’ creation. In addition, patients’ collaborative and yet onerous strategies to access health services imply the opportunities of designing technologies that leverage local social resources. Moreover, to offer satisfactory health services, it is valuable to provide individualized treatment plans that consider patients’ treatment goals, symptoms, and home environment. The findings could apply to similar neurological diseases that require long-term rehabilitation.