pcrc-supported legacy intervention in pediatric palliative care

Conditions: Care Giver; Recurrent Malignant Neoplasm; Refractory Malignant Neoplasm

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.

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.

Eligibility criteria:
inclusion criteria: * children ages 7-17 years will be included so the sample will reflect similar developmental understandings that death is permanent and universal. ages 18 and up are excluded because they begin very different developmental stages of independence as they often leave home and begin college and careers. the principal investigator (pi) or trained clinical trials associate (cta) will determine the primary parent caregiver by gathering objective information (e.g., number of hours spent per week with the child) from the child's legal guardian during the initial recruitment process * relapsed or refractory cancer disease states: this will be determined by parent self-report. this determination will be made at any point within the illness trajectory * able to speak, understand, read, and type english: participants will be limited to those who meet this criterion because the instruments and methods proposed in this research have not been translated in foreign languages * participants will be limited to those who have internet access to allow us to successfully examine the feasibility of a web-based intervention * absence of cognitive impairment: cognitive impairment will be determined by the pi or cta during the consent process. if the child or parent does not understand the consent process (e.g., does not understand project goal, does not understand study procedures), the pi or cta will gently conclude the recruitment process. any data already collected will not be included in data analysis, and the participant will be considered withdrawn