Safe Public Storytelling: 138 Parents on Sharing the Stories of Seriously Ill and Deceased Children

Motivations, Forms, and Conditions of Public Storytelling from the Parents’ Perspective

Abstract

In the Czech public sphere, stories shared by families caring for children with life-threatening or life-limiting conditions, including after a child’s death, are increasingly visible and shape public perceptions of pediatric palliative care. Yet empirical data on parents’ motivations, forms of sharing, and perceived risks remain limited. This article presents results from an anonymous online survey of 138 parents (87% women; 52% university-educated), distributed via the Vlček Family Foundation and patient organizations (response rate 18%).

Sharing was seen as a way to obtain support (79%), raise awareness (61%), and inspire others (59%). Of the 77% who shared their stories, most used social media (59%) or affiliated organizations (58%), mainly through text (83%) and photographs (74%). While 59% reported positive experiences, 9% reported negative ones (e.g., judgment). Conditions for safe sharing included clear rules (93%), content authorization (89%), and respect for boundaries (86%). Main barriers were loss of privacy (57%) and negative reactions (51%).

Sharing appears ambivalent: a source of solidarity but also a digital risk, in contrast to the structured safety of narrative medicine. The study calls for Czech standards of responsible sharing, building on “The Story Belongs to the Family.” Limitations include a non-random, self-selected online sample, restricting generalizability. Nevertheless, the findings offer empirical insight into the Czech context and inform practice and future research.