Feedback on Adapting Interventions for AYA Cancer Survivors’ and Caregivers’ Psychological Distress,Symptom Management,and Health Care Use

Abstract

Purpose:

Adolescents and young adults (AYAs) experience higher burdens of negative psychological outcomes (e.g., depression, anxiety, and stress) of cancer compared to older survivors and caregivers. We elicited feedback about the adaptation of two randomized controlled trials (RCTs), one using a symptom management and survivorship handbook (SMSH) and another using telephone-based interpersonal counseling, for AYA cancer survivors and caregivers of AYAs.

Methods:

Following the parent RCT, we conducted a follow-up study using semi-structured telephone interviews to elicit feedback from AYAs (ages 18–39 years at diagnosis) and adult caregivers of AYAs (aged 18+). Participants were asked to share satisfaction with the (1) content, (2) delivery, and (3) general experiences in the study. Interviews were recorded, transcribed, and quality checked. We categorized qualitative feedback through interpretive description.

Results:

There were N = 18 participants 10 women and 8 men; 8 cancer survivors and 10 caregivers. The interviews were 5–20 minutes (average = 10.5 minutes). Participants enjoyed the content and found the information helpful. Participants preferred digital materials for accessing information about cancer symptom management and treatment. Some participants continue to use the information from the SMSH after their participation.

Conclusions:

AYA cancer survivors and caregivers of AYAs were largely satisfied with the content of the intervention materials. Minor suggestions arose to modify the intervention materials to be more suitable through including digital materials and social connections.