Social Participation Among Long-Term Survivors of Childhood and Adolescent Cancer

The impact of cancer treatment on the social participation of childhood and adolescent cancer survivors remains understudied. Social participation is an important determinant of long-term social outcomes. Therefore, this study aimed to describe the proportion of a cohort of Australian childhood and adolescent long-term cancer survivors experiencing social participation challenges post-treatment.

Survivors aged 8-25 years (1-10 years post-treatment) were recruited from a childhood cancer survivorship clinic. Self-report surveys assessed clinical/demographic characteristics, and perceived levels of social participation before/after cancer treatment. Survivors were invited to an optional, semi-structured interview about the impact of their cancer experience on their social participation.

A total of 52 children/adolescents (M_age = 11.9 ± 2.7 years) and 21 young adults (M_age = 20.5 ± 2.1 years) participated. Approximately 16%-36% of children/adolescents and 14%-43% of young adults perceived a decrease in social participation post-treatment (most children/adolescents did not report on pre-diagnosis participation). In interviews, survivors discussed physical and mental health challenges that occurred during their cancer treatment that affected their social participation, with limited mention of challenges after treatment.

A subset of survivors of childhood and adolescent cancer experiences social participation challenges. However, qualitatively, survivors' descriptions of social challenges centered on their experiences during treatment, rather than after. This suggests that even in the absence of current challenges, some survivors perceive a lasting impact of their cancer experience on their social participation. These findings highlight need for larger, longitudinal mixed-methods studies involving tailored, evidence-based measures of social participation to document changes in the prevalence and course of social participation challenges for post-treatment survivors.