Quality of Life Concerns in Young Adult Survivors of Childhood Cancer: A Qualitative Research Investigation

Although young adult (YA) survivors of child cancer comprise a unique group from a developmental standpoint, in most treatment and research settings either child or general adult measures of quality of life (QL) are used to measure adjustment and functioning. Studies have relied heavily on survey methods, and though many hint at a variety of specific problems that a subset of YAs may experience, most identify YA survivors as relatively well adjusted. Interview studies with survivors and care-providers and interactions in survivor support venues paint a more complex and problematic picture of adjustment. To better understand the QL concerns unique to YAs this study employed grounded theory methodology to build a model of survivorship from participant perceptions. Four focus groups were conducted (N=15) with survivors between the ages of 18 and 30 years recruited from in-person and online support group settings. Themes emerged describing a larger extent of struggles than prior studies have identified. The grounded theory model detailed that having cancer can fundamentally change an individual, and these changes and resulting struggles do not end with remission. Survivors described constantly pursuing normalcy in the context of being fundamentally different, while balancing the dual roles of young adult and survivor. Survivors revealed difficulties in essentially every area of their lives (school, work, friendships, family, romance, self-esteem, outlook and attitudes, etc.), and though many could identify strategies for addressing these problems, maladaptive coping techniques dominated and survivors were left feeling overwhelmed, under-supported, and misunderstood. Results suggest that YAs could benefit from QL measures developed specifically with their unique concerns in mind. While progress has been made in developing YA-specific measures, such measures have not become widespread practice in clinical and research settings. Furthermore, this study suggests that collecting such information in a conversational, semi-structured interview format may elicit a fuller scope of survivors? concerns than pencil and paper methods, though further research is recommended in this area.