Well-aligned with the Palliative Care Research Cooperative (PCRC) mission, examination of web-based recruitment, data collection, and intervention delivery methods that are feasible, cost-effective, acceptable to pediatric palliative care populations, and have the potential to recruit larger, more diverse samples is needed. Preliminary data suggest our legacy-making intervention is feasible via a face-to- face delivery method for children with cancer and shows promise to improve coping and adjustment. We are now well-positioned to test a web-based delivery method to expand our potential impact and ultimately improve coping and adjustment for pediatric palliative care populations. The overall objective of this proposal is to test the impact of a legacy-making intervention on coping and adjustment in children (7-17 years old) with refractory or relapsed cancer and their parents.
Specific aims i nclude (1) to examine the impact of legacy-making on coping strategies and adjustment outcomes among children with refractory or relapsed cancer, (2) to examine the impact of legacy-making on coping strategies and adjustment outcomes among parent caregivers, and (3) to examine the process of implementing a web- based legacy-making intervention for children with refractory or relapsed cancer and their parent caregivers. A sample of 170 children (7-17 years old) with relapsed/refractory cancer and their primary parent caregivers will be recruited via Facebook advertising. Participants will be randomly assigned to either the intervention (n = 85) or control (n = 85) group. Children and parents will complete electronic measures of coping and adjustment at baseline (T1) and 2 months later (T2). The web-based intervention will be delivered to children in the intervention group after T1, and control group after T2. The intervention will guide children to create an electronic digital storyboard about themselves by directing them through the following modules: 1) answer legacy-making questions about themselves, 2) upload photographs, 3) upload video, and 4) upload music. When the storyboard is complete, the website will generate a unique electronic link for the PI to review the child's completed digital story and email to the child-parent dyad. A concluding parent survey will (T3) will be used to further explain intervention outcomes. Results will provide crucial information for future studies using web-based research methodologies to improve sample diversity, increase sample sizes, improve generalizability of results, and ultimately enhance rigor in pediatric palliative care research. This pioneering study will leverage resources from the PCRC and contribute back to the greater body of palliative care and end of life knowledge promoted by the PCRC.
This innovative work aligns with the compelling obligations of the National Institute of Nursing Research that will improve care, decrease suffering and long-term morbidity, and enhance life for children with advanced cancer and their parent caregivers.
