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Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development
Norma Mammone D'Agostino1, Kim Edelstein
1a Psychosocial Oncology and Palliative Care, Ontario Cancer Institute and Campbell Family Institute for Cancer Research, Princess Margaret Hospital, and Department of Psychiatry , University of Toronto , Toronto , Canada.
Abstract:
Young adult (YA) cancer survivors have specific needs because of their age and life stage. The authors investigated the challenges and resource needs of YA survivors, exploring the influence of age at diagnosis (i.e., diagnosis during childhood vs. young adulthood) and the diagnosis of a brain tumor. The authors conducted four focus groups with YA survivors (N = 22, age 18-35), treated for brain tumors or other cancers in childhood (mean age at diagnosis ± SD: brain, 10.7 ± 2.86; other cancers, 10.5 ± 3.51) or as YAs (brain, 23.5 ± 4.04; other cancers, 25.6 ± 4.10). Transcripts of audiotaped sessions were coded using thematic analysis. Common challenges across the groups included physical appearance, fertility, late effects, social relationships, and changing priorities. Childhood cancer survivors struggled with identity formation, social isolation, and health care transitions. Concerns specific to survivors diagnosed as YAs included financial independence and protecting parents. Childhood brain tumor survivors struggled with cognitive deficits, limited career options, and poor social skills, whereas brain tumor survivors diagnosed as YAs emphasized cognitive decline, loss of autonomy, and living with an incurable disease. Despite the unique challenges identified, all groups described similar resource needs including peer support, age-specific information, and having health care providers proactively raise salient issues. Young adult cancer survivors have many similar psychosocial and information needs regardless of age at or type of diagnosis that differ from those of pediatric and older adult survivors. With improved survival rates, the small number of YA in any one institution will grow. It will become increasingly important to create comprehensive, age-appropriate YA programs that address overlapping and unique needs of survivors at this life stage.
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