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caregivers, children, hospice and palliative care nursing, palliative care, palliative supportive care, pediatric nursing, terminal care



  1. Akard, Terrah Foster PhD, RN, CPNP, FAAN
  2. Wray, Sarah MSN, RN, CPNP
  3. Friedman, Debra L. MD, MS
  4. Dietrich, Mary S. PhD, MS
  5. Hendricks-Ferguson, Verna PhD, RN, FPCN, FAAN
  6. Given, Barbara PhD, RN, FAAN
  7. Gerhardt, Cynthia A. PhD
  8. Hinds, Pamela S. PhD, RN, FAAN
  9. Gilmer, Mary Jo PhD, MBA, RN-BC, FAAN


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.