Adults with congenital heart disease: the patients' perspective.

Abstract

Over the last 50 years technical and other advances have resulted in more than 90% of children born with congenital heart disease (CHD) surviving and reaching adulthood. This new patient population has been largely overlooked in recent policy and practice developments in health and social care. Evidence available at the start of the study confirmed increased survival and suggested the need for life long follow up. There was found to be limited research exploring the view of what was required by adults with CHD or into psychosocial aspects of living with a heart condition. The purpose of this phenomenological study was to discover the adults' experience of living with CHD. Twenty-eight people, over the age of 20 years, who had undergone surgery for their heart condition, participated in semi-structured interviews during which they recounted their experience of growing up and living with CHD. Five people, who epitomised being well, contributed to second interviews during which they told stories that demonstrated what being well meant for them. Thematic analysis revealed participants had a positive view of themselves and were highly motivated to maintain their health. Their heart condition was an integral part of who they were, but did not dominate their life. Three main areas influenced the positive view held by participants. These were: first the perceptions of wider society, second when the CHD impacted on available choices, and third when hospital attendance occurred. Second interviews revealed `being well' developed through participants' ability to make their own decisions, which was done in a responsible manner, resulting in informants being able to get on with life, engaging in activities of their choosing. The study findings inform proposals for services to develop in ways that can enhance opportunities for adults with CHD to achieve their full potential. Developing skills relevant to `non-patient' activities and managing the misconceptions of wider society are key factors in adults with CHD being able to participate in meaningful activities of their choice. It is essential for health and social care to be delivered in ways that promote patient autonomy and self-management. Areas for further research emerge from the findings. Hearing the way living with CHD is experienced during childhood and adolescence can contribute to transition processes. Hearing the experience of other groups including parents, partners and health professionals, as well as people surviving with other chronic childhood conditions, can add to the findings presented here.