A qualitative study exploring behavioural change intervention in Congenital Heart Disease

Medical advancements have significantly improved survival of patients with Congenital Heart Disease (CHD). Consequently, an aging CHD population are more susceptible to cardiac-related complications and co-morbidities. Early intervention, with individually-tailored, patient-centred approaches targeting physical activity, diet and stress, can reduce these modifiable risks. Lifestyle Intervention Programmes (LIP) are safe, cost-effective interventions, aiming to promote positive health behaviour change. CHD LIP efficacy research is limited. This study aims to explore patients’ expectations and experiences to better identify determinants of patient adherence and aspects of LIP that need developing. Qualitative study using semi-structured interviews. Group 1 included seven patients who had not taken part in a LIP to establish views and expectations of LIP. Group 2 included five patients who participated in 3-month pilot LIP at Guy's and St Thomas' to gather feedback on their experience. Three key themes were identified from Group 1 data: Expectations of Lifestyle Intervention Programme and Intentions to Engage, Views about Online Support for Lifestyle Intervention Programme, Patient Anxieties about Exercise Damaging their Heart. Four key themes were identified from Group 2 data: Insufficient Dietary Information, Brilliant Intentions Marred by Barriers, Pertinence of Plans to Patients, Positive Patient Experiences and Outcomes. This study provides new insight into beliefs, expectations and experiences of patients with CHD. Findings support the value of LIP for CHD and inform recommendations for LIP development including need for health psychology, dietetic support, more education, greater focus on techniques to address barriers to adherence and scope for specifically-designed App.