“She Was a Little Social Butterfly”: A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors

Abstract

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents’ perceptions of their children’s impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

“…AYA brain tumour survivors are often at higher risk of cognitive issues than other cancer survivors . Impaired memory seemed to be the most common cognitive issue . Qualitative findings established that impaired memory was a daily issue.…”

“…Articles reported AYA survivors having impaired social functioning, expressed as, eg, avoiding social situations, or social isolation . Poorer social functioning was reported among brain tumour survivors compared with other cancer groups .…”

“…During treatment, survivors spend a long time in social isolation after which some young people found it difficult to engage with others again . Physical issues, eg, headaches or impaired fitness, as well as cognitive deficits were linked to social functioning and impacted on survivors' abilities to join in sports or hobbies …”

“…AYA survivors rarely lived independently, which was linked to feelings of frustration . That said, survivors generally report close relationships with their family . Poorer survivor cognitive functioning and lower income were associated with worse family functioning.…”

“…Many survivors presented with poor processing speeds, leading to poorer physical and/or mental health, social functioning, and health‐related quality of life . Similarly, language and vocabulary issues were challenging .…”