A service evaluation of an NHS patient support programme for adults with congenital heart disease

Kovacs et al (2005) review of the literature acknowledges the biopsychosocial impact of congenital heart disease (CHD). Livecchi & Morton (2023) share their lived experience of congenital heart disease, and evidenced based strategies for facilitating living well alongside this ‘condition’ (eg. CHD became referred to as CHC). Anecdotal evidence from patients attending an Adult Congenital Heart Disease Psychology outpatient NHS clinic; highlighted themes of social isolation, reduced social connection and the need for intervention. This evaluation was the first UK based group to be developed based on Livecchi & Morton’s (2023) work. The service evaluation of this pilot online group provision was designed to reduce social isolation and increase connection in adults diagnosed with congenital heart disease (age range 22-69yrs). The original sample (n=10) reduced to (n=8; 2 males and 6 females), due to n=1 attending surgery, and n= 1 facing unrelated psychosocial stressors. A mixed methods design utilising validated measures: Cardiac Distress Inventory 55-item measure (Jackson et al, 2022) and Neuroception of Psychological Safety Scale (Morton et al, 2021), was administered before and after delivery of the six session programme. Descriptive data analysis was conducted. Qualitative data was obtained in regard to attendees’ experience of the programme; collated at the end of each session and at the end of the programme. Key findings were; that patients’ on average (mode) initially felt highest cardiac distress for the ‘overwhelming and depletion’ categorisation; and on average (mode) felt least safe due to not feeling valued, not feeling heard and stated their breathing to be unsteady. Post-intervention feedback included the ’valued opportunity to connect with others who have CHC’, and being ‘allowed’ a voice to express feelings. The group agreed that it was important and helpful, that one of the facilitators also had a diagnosis of CHC.