‘Rule your condition, don't let it rule you’: young adults’ sense of mastery in their accounts of growing up with a chronic illness

Abstract

Poor control of chronic illness is often attributed to patients’ non‐adherence to medical advice and treatment. Policy and practice has traditionally focused on improving adherence, assuming that the more patients comply, the better their control and outcomes will be. Drawing on complexity theory, we question this logic in a secondary analysis of qualitative data from studies of young adults’ experiences of growing up with a chronic illness. Examining their sense of mastery of their condition, we found they valued both being in medical control of their condition and having autonomy but had different ideas about how to achieve these goals. While some young adults mostly shared the traditional medical view that achieving good control was the key to retaining their autonomy, others saw control and autonomy as independent, non‐linear and potentially conflicting goals. The latter endeavoured to achieve both goals by striking a balance, variously adopting strategies of engagement with and resistance to their regime in the changing social contexts of their lives. We suggest that policy and practice needs to do more to promote autonomy and adaptive capacity, rather than simply maximising adherence and control, recognising the mundane complexity of living with and managing a chronic illness.

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

“…Research exploring young peoples' experiences of living with different conditions has uncovered consistent themes. Studies highlight how living with a chronic illness involves managing physical symptoms such as pain and living a life that is structured and controlled by treatment regimens (Atkin & Ahmed, ; Guell, ; Heaton, Raisanen, & Salinas, ). The theme of normalization is woven through the literature.…”

“It's not who I am”: Children's experiences of growing up with a long‐term condition in England, Australia, and New Zealand

“…The impact and influence of a long‐term condition on adolescents tend to be reported in terms of the young people's resilience and how the young people adjust to and aim for control over the disruption associated with the condition (Cartwright et al., ; Ferguson & Walker, ; Tong, Jones, Craig, & Singh‐Grewal, ). However, positive affirmatory (Nicholas, Picone, & Selkirk, ), resourceful (Cartwright et al., ), and mastery (Heaton, Räisänen, & Salinas, ) responses to chronic illness have to be seen in the context of the challenges that the young people face (Venning et al., ). These challenges include feelings of vulnerability and isolation (Nicholas et al., ), difficulties in sustaining friendships (Taylor, Gibson, & Franck, ), managing the burden of the illness (LeBovidge, Lavigne, Donenberg, & Miller, ), and threats to a young person's self‐esteem (Pinquart, ).…”

Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

“…Developing medical autonomy at the same time as developing autonomy as an adult more generally adds complexities to the experience of growing up with a chronic condition (Heaton et al . ).…”

“…Previous studies of young people with diabetes have found how similar tensions between moral demands on young people to exert control on themselves translate into multiple and conflicting self-disciplining practices (Balfe 2007). Developing medical autonomy at the same time as developing autonomy as an adult more generally adds complexities to the experience of growing up with a chronic condition (Heaton et al 2016).…”