Fathers of Children with Congenital Heart Disease: Sources of Stress and Opportunities for Intervention

Objectives: To examine sources of stress for fathers of children with congenital heart disease and opportunities for intervention to prevent or reduce paternal mental health problems. Design: Qualitative study using online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample. Setting: Yammer, an online social networking site. Subjects: Geographically diverse sample of 70 parents (25 fathers and 45 mothers) of young children with congenital heart disease. Interventions: Participants joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process, and themes regarding sources of stress for fathers of children with congenital heart disease and opportunities for intervention were identified. Measurements and Main Results: Four broad themes regarding sources of stress for fathers of children with congenital heart disease emerged from the qualitative data from both mothers and fathers: societal expectations for fatherhood and standards of masculinity, balancing work and family responsibilities, feeling overlooked as a partner in care, and lack of father supports. To begin to address these sources of stress, participants recommended that care teams acknowledge and normalize the impact of congenital heart disease on fathers, provide support for balancing work and family responsibilities, recognize and promote father knowledge and engagement, and provide formal and informal supports for fathers of children with congential heart disease. Conclusions: Fathers of children with congenital heart disease experience unique sources of stress in the absence of targeted interventions to meet their needs. Care teams play an important role in acknowledging the experiences of fathers and including and engaging fathers in care.