Abstract

Objectives: The overall aim of this qualitative study is to examine young adult’s sense of mastery of their long-term condition – what this means to them, if they feel they have achieved it, and how this relates to medical conceptions of control – and to consider the implications for health service policy and services. In this paper I examine how young adult’s sense of mastery is reflected in the advice they give to their contemporaries with a long-term condition about managing it while growing up. I then consider the implications of the findings for policy concerning younger people who have long-term conditions.

Data and methods: The paper is based on a secondary analysis of over 100 interviews with young adults aged 15–29 with type 1 diabetes, epilepsy and other long-term conditions in the UK. Secondary analysis has been increasingly used in qualitative research to investigate new research questions, or to follow up questions emerging from previous analyses, using pre-existing data obtained from archives, informal data sharing or self-retained data from previous studies (Heaton 2004, 2008). In this secondary study, the data were drawn from a collection of interviews carried out by the Health Experiences Research Group at the University of Oxford for the www.YouthHealthTalk.com website.

Results: As Kelleher (1988) has pointed out, the notion of being ‘in control’ of a chronic illness such as diabetes can be problematic to those with such a condition. This is because of the potentially paradoxical demands of the therapeutic regime which, in the case of diabetes is to keep good control of blood sugar levels, whilst adherence to the regime that makes this possible may be experienced as a loss of control over one’s life and a threat to one’s autonomy. In their messages and advice to their peers, young adults’ often address this issue. They emphasise the need to find a balance between sufficient engagement with the condition, while at the same time resisting any perceived threat to their personal autonomy posed by their condition or its associated therapeutic regime.

Policy implications: This work suggests that young adults’ conceptualisations of what it means to master a chronic illness may shift with their experience of growing up with a chronic illness; their ideas may also vary from traditional medical conceptualisations. In their advice to their peers, both having control and retaining autonomy are important to young people as they desire to live their lives as normally as possible despite their condition and its therapeutic regime. Where therapeutic regimes provide control but at the expense of autonomy, then young adults may, if they value the latter as much as or more than the former, decide to not follow the regime. Polices for younger people with long-term conditions need to promote interventions and services which better enable people to master their chronic illness in these dual terms.

Slides