Articulating viewpoints to better define and respond to the needs of adolescents and young adult survivors of pediatric brain tumors

Abstract

Purpose

Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors’ perspective on their post-treatment needs and ways to improve resources and interventions.

Methods

We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15–22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups.

Results

Categorization of participants’ responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures.

Conclusion and implications for psychosocial providers

This study identified solutions for AYA-PBTS’ specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.

Keywords:

• adolescent/young adult
• brain tumor
• health-care provider
• qualitative research
• survivorship
• unmet needs

Acknowledgments

The authors gratefully acknowledge all the young people, parents, clinicians and members of community organizations who participated by sharing their experiences and helping us in this research’s development.

Disclosure statement

No competing financial interests exist.

Additional information

Funding

This research was supported by the Sainte-Justine University Health Center Foundation, through endowments to the Center of Psycho-Oncology (CPO, Dr. Serge Sultan).