Adolescent and Young Adult Survivors of Childhood Brain Tumors

Abstract

Background To date there are few studies that examine the perspectives of older survivors of childhood brain tumors who are living with their families in terms of their sense of self and their role in their families. Objective To describe how adolescent and young adult survivors (AYA) of childhood brain tumors describe their HRQOL, that is their physical, emotional, and social functioning. Methods This qualitative descriptive study included a purposive sample of 41 AYA survivors of a childhood brain tumor who live with their families. Home interviews were conducted using a semi-structured interview guide. Directed content analytic techniques were used to analyze data using HRQOL as a framework. Results This group of brain tumor survivors described their everyday lives in terms of their physical health, neurocognitive functioning, emotional health, social functioning, and self-care abilities. Overall, survivors struggle for normalcy in the face of changed functioning due to their cancer and the (late) effects of their treatment. Conclusions Neurocognitive issues seemed most compelling in the narratives. The importance of families went beyond the resources, structure, and support for functioning. Their families provided the recognition that they were important beings and their existence mattered to someone. Implications for Practice The value and complexity of care coordination was highlighted by the multifaceted needs of the survivors. Advocacy for appropriate and timely educational, vocational, and social support is critical as part of comprehensive cancer survivorship care.

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

“…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 .…”

“…Poorer social functioning was reported among brain tumour survivors compared with other cancer groups . Specifically, multiple studies reported a link between poorer social functioning and anticancer treatment and diagnosis . During treatment, survivors spend a long time in social isolation after which some young people found it difficult to engage with others again .…”

“…Six articles reported impaired daily functioning and/or functional living skills, survivor restrictions ranged widely in severity, with only a small minority reporting no limitation in daily activities . Qualitative work linked these restrictions to impaired cognitive functioning through difficulties with reading or handling finances, or managing medications . AYA survivors rarely lived independently, which was linked to feelings of frustration .…”

“…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.…”

“…Survivors were more likely to be unemployed later in life when compared with age and gender‐matched controls and other cancer survivors, with reported unemployment rates varying from 8% to 70%. Issues in attaining or keeping a job included fatigue, poor concentration, physical issues (eg, epilepsy), cognitive difficulties, and poor social skills . Some survivors had sheltered work, a setting in which people with disabilities receive services and training to develop work‐related skills and behaviours .…”