What matters to patients with stroke in India and why: a qualitative study

To gain insight into the preferred outcomes of patients with stroke living in India and develop a conceptual framework of participation in daily activities based on patient perspectives informed by the International Classification of Functioning, Disability, and Health.

This study took a phenomenological approach. A purposive sample of 30 patients with stroke and diverse socio-demographic and disease related characteristics participated in semi-structured interviews. Interviews consisted of open-ended questions about their post stroke rehabilitation goals. Data were analyzed using content analysis.

Patients expressed preference for outcomes such as the use of eastern toilets, squatting and sitting on the floor, eating with the right hand, taking a "bucket bath," walking for long distances (1-2 km) and the use of public transportation. Patients attributed their outcome preferences to contextual factors such as the physical environment (natural and built environment), family structure and living conditions, cultural values, norms and practices. Based on the outcomes identified by the patients, we developed the conceptual framework of participation in daily activities relevant to Indian context consisting of Mobility, Self-care, Domestic Life, and Social participation domains informed by the International Classification of Functioning, Disability, and Health.

Outcome preferences of patients with stroke are not universal. The conceptual framework including its domains and contents developed in this study can be a useful guide to clinicians and researchers in choosing what to measure within Indian as well as other similar sociocultural contexts.Implications for rehabilitationPost-stroke functional outcome measurement is meaningful only when it is conceptualized within the context in which the personal, social, and cultural values of patients are well-recognized.There are notable differences in the type of activities constituting daily activities and how they were performed in India compared to a western cultural context.Patients' daily functioning is characterized by the differences in personal preferences, cultural norms and practices, family and living arrangements, lifestyle, and characteristics of natural and built environment and the available public infrastructure.Differentiating activities patients cannot do from the "no need to do" or "don't want to do" should be viewed as a critical aspect of patient reported outcome measurement.