“You Can Carry the Torch Now:” A Qualitative Analysis of Parents’ Experiences Caring for a Child with Trisomy 13 or 18

Abstract

Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days in the hospital were most likely to accept the invitation (OR 8.8, p = 0.02). Grounded theory technique was used to analyze the interviews. This method elicited four key themes regarding family perspectives on children with T 13/18: (1) they are unique and significant, (2) they transform the lives of others, (3) their families can feel overwhelmed and powerless in the medical setting, (4) their families are motivated to “carry the torch” and tell their story. Families also emphasized ways in which Internet support groups can provide both positive and negative perspectives. The ensuing discussion explores the difficulties of parents and physicians in forecasting the impact that T 13/18 will have on families and emphasizes a narrative approach to elicit a map of the things that matter to them. The paper concludes that while over-reliance on dire prognostic data can alienate families, examining the voice, character and plot of patient stories can be a powerful way for physicians to foster shared decision-making with families.