NCT04059393

PCRC-Supported Legacy Intervention in Pediatric Palliative Care

Impact of a PCRC-Supported Legacy Intervention in Pediatric Palliative Care

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 300 (actual)
• Sponsor: Vanderbilt-Ingram Cancer Center · Academic / Other
• Sex: All
• Age: 7 Years – 17 Years
• Healthy volunteers: Accepted

Summary

This trial studies how well a web-based legacy intervention works in improving the quality of life in caregivers and younger patients with cancer that has come back (recurrent) or does not respond to treatment (refractory). Legacy-making, defined as doing or saying something to be remembered, may reduce the suffering of children with cancer and their caregivers. Currently, there is little information about what kinds of legacy-making activities are helpful from the perspective of children. Using a web-based digital storytelling intervention, this study may help researchers examine what children think about these legacy-making activities and what kinds of activities might be helpful to them.

Detailed description

PRIMARY OBJECTIVES: I. To examine the impact of legacy-making on coping strategies and adjustment outcomes among children with refractory or relapsed cancer. II. To examine the impact of legacy-making on coping strategies and adjustment outcomes among parent caregivers. III. To examine the process of implementing a web-based legacy-making intervention for children with refractory or relapsed cancer and their parent caregivers by obtaining parent self-reports (e.g., What did you and your child-like/not like about the intervention? How difficult was it to complete the intervention? What made it difficult? What else you would like to teach us?). OUTLINE: Patients are randomized to 1 of 2 groups. GROUP I: Patients participate in a web-based legacy intervention by answering questions about themselves and uploading videos, photographs, and music to create a digital story within 2 weeks. GROUP II: Patients receive standard of care. Patients have the option to participate in the web-based legacy intervention after 2 months.

Conditions

• Care Giver
• Recurrent Malignant Neoplasm
• Refractory Malignant Neoplasm

Interventions

Type	Name	Description
OTHER	Internet-Based Intervention	Complete web-based legacy intervention
OTHER	Best Practice	Receive standard of care
OTHER	Quality-of-Life Assessment	Ancillary studies
OTHER	Questionnaire Administration	Ancillary studies

Timeline

• Start date: 2015-07-27
• Primary completion: 2018-06-05
• Completion: 2018-06-05
• First posted: 2019-08-16
• Last updated: 2023-11-18

Locations

1 site across 1 country: United States