Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer

J Hosp Palliat Nurs. 2020 Feb;22(1):49-60. doi: 10.1097/NJH.0000000000000614.

Abstract

Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.

Trial registration: ClinicalTrials.gov NCT04059393.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Chi-Square Distribution
  • Child
  • Child, Preschool
  • Female
  • Health Services Accessibility / standards*
  • Health Services Accessibility / trends
  • Humans
  • Internet
  • Male
  • Neoplasms / complications
  • Neoplasms / psychology
  • Neoplasms / therapy*
  • Palliative Care / methods*
  • Palliative Care / trends
  • Quality Improvement
  • Social Media / instrumentation*
  • Social Media / standards
  • Surveys and Questionnaires
  • Young Adult

Associated data

  • ClinicalTrials.gov/NCT04059393