“Yer a total freak show” : a longitudinal mixed-methods study of illness perceptions, self-identity and health behaviour in working-age Phase IV cardiac rehabilitation attendees and the role of spouses

Background: Phase IV cardiac rehabilitation (CR) improves outcomes and facilitates behaviour change following myocardial infarction. Although one-third of myocardial infarction (MI) patients in Scotland are under 65 years old, research is lacking in this age group. Aim: To explore the experiences, illness perceptions (Leventhal) and self-identity (Charmaz) of working age (18-65 year olds) individuals attending Phase IV cardiac rehabilitation, including around initiation and maintenance of lifestyle change and the role of spouses. Methods: 16 participants (14 male, 2 female) and 12 spouses (10 female, 2 male) completed nearly 23 hours of semi-structured interviews at the start and end of Phase IV cardiac rehabilitation in Fife and Dundee. Participants completed health behaviour and illness perceptions questionnaires at these time points and after 3 months. Data were integrated and analysed using framework analysis. Results: The MI conflicted with participants’ self-identity. Fear and perceived consequences led to restrictive and protective control behaviour from both participants and spouses. CR aided participants goal of ‘getting back to normal’ - providing safety, monitoring and knowledge reduced fear, allowing return to pre-MI activities and behaviour, both healthy and unhealthy. Perceived cause, communication from health professionals, social influences all impacted health behaviour outcomes, which were varied. Although there were improvements in health behaviour at end of CR, these were not sustained at 3-month follow-up. Identity disruption, mood changes and medication side-effects persisted at 3-month follow-up. Psychological and longer-term support was lacking. Discussion: Cardiac rehabilitation is a time of transition, with experiences and outcomes varying between individuals. Participants and health professionals desired behaviour may conflict. Further research should explore long-term outcomes and opportunities for intervention and support in this group, as well as female attendance and gender. Using longitudinal mixed-methods, and theoretical models provides insight into processes over time but require careful data management and analysis."This work was funded through a collaborative PhD studentship (Grant Reference XCHF06, Sponsor Reference ES/J500136/1) provided by the Economic and Social Research Council (ESRC), via the Scottish Graduate School of Social Science, in collaboration with Fife Sports and Leisure Trust." -- Fundin