Miles to go before we sleep: how illness experiences shape health behaviours in India

Abstract

Background: The current project synthesized qualitative research exploring illness experiences and health behaviours among medical care recipients of different chronic diseases in India. Methods: Semi-structured, tape-recorded interviews were conducted with patients with diabetes (50), cancer (26), high risk pregnancies (26), and with parents of children with neurological diseases (25). The data was analysed using Interpretative Phenomenological Analyses. Findings: Main themes included (i) poor psychosocial outcomes: participants reported poor levels of medical literacy, an inability to navigate the healthcare system (due to psychosocial and structural barriers), relying primarily on personal experiences to guide them through their care, increased psychological distress, and negative illness perceptions, (ii) poor behavioural outcomes: participants reported poor medical adherence, inability to follow the prescribed diet and exercise, and not attending medical appointments, (iii) positive participant attitudes: most participants expressed a desire to correct their unhelpful behaviours but were unable to access adequate and appropriate support, and (iv) capacity for coherence and agency in supportive role allocation: participants were able to identify supportive roles for their social groups (e.g., physicians provided medical informational support, family offered emotional support). Discussion: At a national level, this project emphasizes a need to reassess existing public health and medical programmes. In order to improve their effectiveness, it is useful to include the lived experiences of medical care and elements of patient empowerment during the development of these programmes. At an international level, this project invites health researchers to expand on existing theory and practice to include socio-cultural contexts of care.