Spots Global Cancer Trial Database for PCRC-Supported Legacy Intervention in Pediatric Palliative Care

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Trial Identification

Brief Title: PCRC-Supported Legacy Intervention in Pediatric Palliative Care

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

Study ID: NCT04059393

Conditions

Care Giver

Recurrent Malignant Neoplasm

Refractory Malignant Neoplasm

Interventions

Internet-Based Intervention

Best Practice

Quality-of-Life Assessment

Questionnaire Administration

Study Description

Brief 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.