Parenthood against the clock: Experiences of being a parent with congenital heart disease - A qualitative study

Most people with congenital heart disease (CHD) now reach adulthood, and many wish to become parents. However, many in this group struggle with health challenges and are at risk for complications related to their heart disease early in life. What parenthood means for adults with CHD is still an unexplored area. Describe experiences of being a parent with CHD. Ten semi-structured interviews with six women and four men were conducted using an inductive approach. Inclusion criteria: (i) visiting a CHD clinic at least once after age 18 and (ii) having biological children. Data were analyzed using qualitative content analysis, from a manifest level to deeper latent interpretation. The results comprised three themes. The complex emotional landscape of parenthood covered how heart disease became a tangible concern after becoming a parent, making life feel fragile. Strategies for navigating life as a parent illustrated how participants dealt with parenthood by adapting to their limitations and accepting their present and future. Sharing eases life's challenges described the participants' need to be met as whole person facing both physical and emotional challenges. The heart disease became visible in the daily lives of parents with CHD, both as a tangible reminder and in a physical sense. Healthcare professionals should address physical and emotional challenges, as parenthood can heighten awareness of personal vulnerability. The study underlines the need to inquire about support and counseling needs, as parenthood for adults with CHD can add an extra dimension to life's challenges. [Display omitted] •Participants expressed deep gratitude for the experience of parenthood.•The CHD became increasingly visible in daily life as a tangible reminder and in a more physical sense.•Parents with CHD desire to be met both physically and emotionally by healthcare•The study emphasises healthcare professionals to be aware and inquire about the need for counselling.