Aim: to explore how adults understand their congenital heart disease; this study explored adults’ views of living well with CHD.

Research design: a convenience sample of twenty-eight people aged 20-52 years was recruited from an adult congenital cardiac outpatient clinic at a UK tertiary cardiac centre. Participants took part in qualitative, one-to-one, focused interviews in which they provided their personal story of living with their heart condition.

Findings: the key themes emerging from the stories were health within illness and positive health. These themes are related to the sense of coherence outlined by Antonovsky in 1987, which is used to situate the adults’ understanding of their heart condition within existing theories of health behaviour change. Events that are understandable, meaningful and manageable contributed to participants’ perceptions of being well.

Conclusions: information about the heart condition was understandable when it was related to daily life; this was in contrast to medical, textbook explanations.
Engaging in meaningful activities contributed to participant’s well being. This included making their own decisions regarding career options, relationships, sporting activities.
Events were considered to be manageable if support was available, when necessary, from family, partners, friends or health professionals. Participants appreciated opportunities to provide support for themselves and others, demonstrating a reciprocal partnership, rather than dependency.

Implications for practice: structuring clinic activities using principles of motivational interviewing may contribute towards preparing ACHD patients to engage actively in the clinic visit.