How do psychosocial challenges associated with living with congenital heart disease translate into treatment interests and preferences? A qualitative approach

OBJECTIVES: There is an increasing amount of research being conducted regarding the psychosocial challenges associated with living with congenital heart disease (CHD), however little is known about how these challenges influence the type of psychosocial services patients want. This study investigated (1) the type of services patients want; (2) how they want to access these services; and (3) why they want these services. METHODS: Three focus groups with adults with CHD (total of 14 participants aged 19-67) were conducted and thematic analysis was used to identify emerging themes. RESULTS: Participants described wanting to access specific psychosocial services in three broad categories (counselling, connecting with other adults with CHD and psycho-education) and in three main formats (individual/group therapy, mentorship programmes and patient conferences). Reasons for wanting these services were grouped under two overarching themes, namely intrapersonal factors and interpersonal challenges. CONCLUSIONS: Psychosocial challenges are part of the everyday lives of adults with CHD, yet they are rarely addressed as part of routine medical care. Patients themselves have clear opinions regarding the psychological services most appropriate to target their experiences of living with CHD.