Curing the blood and balancing life: Understanding, impact and health seeking behaviour following stroke in Central Aceh, Indonesia

Abstract

Previous studies have highlighted the importance of understanding the subjective illness experience. Stroke, as the second highest cause of death and highest cause of adult morbidity internationally, is no exception. However, the research to date has significant gaps. Lay understandings of stroke in low and middle income countries remain poorly understood, and very few studies have explored the links between experience and the context in which they occur. These gaps in knowledge have resulted in insufficient attention being paid to the relevance of local contexts in the implementation of international and regional recommendations for stroke.

The study presented in this thesis explores the experience of stroke in Central Aceh, Indonesia. It drew on phenomenology and ethnography and used a range of qualitative methods. People with stroke and their carers were involved in the examination of stroke understandings, its causation and mechanism, the impact of stroke on their lives, and actions taken to remediate the symptoms. This information was complemented with an in-depth study of healers, within the context of the health systems through which they operate. Further information on current social, religious and cultural practices was gathered through participant observation.

The study revealed that lay understandings occurred within a range of explanatory models. Also highlighted was the complex relationship between the understanding of the condition, the impact on the family, and the health seeking behaviour. All were influenced by the specific context and an attempt to regain a homeostatic balance in life; within the person, with others, and with the supernatural.

The results of this study demand critical interrogation of the international guidelines both for stroke and for policies to promote access to health personnel at the primary care level