Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports.

OBJECTIVE

To identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress.

METHOD

Parents of children diagnosed prenatally with CHD (N = 37) were purposively sampled across eight health systems. Qualitative data were collected using crowdsourcing methods and coded/analyzed using thematic analysis.

RESULTS

Social stressors increasing distress after prenatal diagnosis were widely endorsed: (1) feelings of loneliness (most common: 68%), (2) well-meaning yet unhelpful comments, (3) loss of celebration of pregnancy, (4) information overload, and (5) untimely/insensitive discussions surrounding pregnancy termination. Social supports included: (1) emotional support and small acts of kindness, (2) hope/connection through the experiences of others, (3) informational support, (4) nurturing normalcy and the joy of pregnancy, and (5) connection through religion/spirituality.

CONCLUSION

Interpersonal relationships are vital for coping with prenatal diagnosis. Interventions to reduce distress after prenatal diagnosis should attend to common social stressors.