‘‘You Can Carry the Torch Now:’’ A Qualitative
Analysis of Parents’ Experiences Caring for a Child
with Trisomy 13 or 18
Joshua D. Arthur
Published online: 26 May 2017
Ó Springer Science+Business Media Dordrecht 2017
Abstract Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities asso-
ciated 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 fore-
casting 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.
& Joshua D. Arthur
Pediatrics and Health Care Ethics, Saint Louis University School of Medicine, 1465 South
Grand Boulevard, St. Louis, MO 63104-1095, USA
Saint Louis University School of Medicine, 1465 South Grand Boulevard, St. Louis,
MO 63104-1095, USA
HEC Forum (2017) 29:223–240