Digital Stories Created by Children With Advanced Cancer.

Morgan L Whitlow, Mary Jo Gilmer, Mary S Dietrich, Eunji Cho, Terrah Foster Akard
Author Information
  1. Morgan L Whitlow: School of Nursing, Vanderbilt University, Nashville, TN, USA.
  2. Mary Jo Gilmer: School of Nursing, Vanderbilt University, Nashville, TN, USA. ORCID
  3. Mary S Dietrich: School of Nursing, Vanderbilt University, Nashville, TN, USA.
  4. Eunji Cho: Connell School of Nursing, Boston College, Chestnut Hill, MA, USA.
  5. Terrah Foster Akard: School of Nursing, Vanderbilt University, Nashville, TN, USA. ORCID

Abstract

Legacy building is a priority for pediatric oncology. Storytelling is one strategy to help children document their legacies. Understanding story content would advance knowledge of how children want to be remembered but this has yet to be explored. This study explored content of digital stories created by children with advanced cancer. Facebook advertisements were used to recruit families of children (7-17) with relapsed/refractory cancer to participate in a randomized controlled trial testing a legacy intervention through storytelling. Parent-child dyads (���=���150) were randomly assigned to an intervention or usual care group. A web program guided children to answer legacy questions and upload photographs, movies, and music. Families received the final digital stories. Experienced qualitative coders developed a hierarchical coding system to identify major categories/subcategories within 78 stories. Stories included 1,516 unique story entries, including text, photographs, and movies. Two major categories emerged from the data: (a) story entry medium and (b) story content. Photographs frequently reflected people, objects, pets, and places while text often described personal preferences, goals, dreams, and other people. The story content overall included references to (a) people, (b) setting/location, (c) cancer, (d) objects/activities, and (e) expression of emotions/beliefs. Exemplar quotes, counts, and frequencies for each category are reported. Children documented their legacies through stories that emphasized the value of family relationships and children's desires to be known for personal traits/preferences. Children chose to include cancer in their stories, indicating that cancer is a part of how children perceive their legacies. : ClinicalTrials.gov NCT04059393.

Keywords

Associated Data

ClinicalTrials.gov | NCT04059393

MeSH Term

Humans
Neoplasms
Child
Male
Female
Adolescent
Narration

Word Cloud

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