Adolescent Survivors of Childhood Cancer and Their Perspectives of the Transition to Early Survivorship: An Exploratory Qualitative Investigation

Abstract

Purpose: To examine the perspectives of adolescent survivors of childhood cancer during the transition to early survivorship. Methods: An exploratory, retrospective qualitative study using a multiple case study research design was conducted with eight adolescent survivors of childhood cancer between the ages of 14 and 17 years old. Adolescents who participated in the study were off treatment for a minimum of 6 months and a maximum of 5 years. Participants completed a demographic questionnaire, a semi-structured individual interview, and a follow-up meeting. Data were analyzed using a template organizing style, immersion/crystallization approach, and cross-case analysis strategies within the context of a pediatric oncology transition conceptual framework. Results: Adolescent survivors perceived that their lives changed after treatment completion, but they did not define this time as a ''transition.'' They identified re-engagement in activities and improvement in or absence of negative residual effects of treatment as indicators of returning to normalcy. Presence of residual effects restricted adolescents' participation in desired activities and reminded them that the impact of cancer and treatment extended beyond treatment completion. Adolescents varied in their perceived need for transition care. Conclusion: Adolescents have a unique perspective regarding the transition to early survivorship, providing support for distinguishing them as a distinct subgroup of cancer survivors.

The Continuity of Cancer: Children and Adolescent’s Experiences of Ending Cancer Treatment – A Systematic Review

“…Thirty articles were further excluded on the basis of lacking ending related content, reflecting adult voices, having been conducted during active cancer treatment, reporting on secondary data and representing presentations or abstracts. The final review included 16 articles (An & Lee, 2019; Ander et al, 2018; Björk et al, 2011; Duffey-Lind et al, 2006; Firth et al, 2013; Haase & Rostad, 1994; Jones et al, 2011; Lopez et al, 2014; Palmer et al, 2007; Perez & Greenzang, 2019; Psihogios et al, 2019; Wakefield et al, 2012; Wakefield et al, 2013; Walker et al, 2019; Weekes & Kagan, 1994; Woodgate, 2006; see Figure 1. )

Figure 1.PRISMA flow diagram of search strategy.

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“…For some, the end was defined as a transition, as moving forward into a new life or returning to an old life, rather than being framed as an ending. Adolescents described this shift to early survivorship in a variety of ways, including: ‘closing a chapter and moving on,’ ‘moving on to the next stage,’ ‘stepping back into the story or page of a book,’ and ‘continuation of the journey’. (Lopez et al, 2014)…”

“…Adolescents described this shift to early survivorship in a variety of ways, including: ‘closing a chapter and moving on,’ ‘moving on to the next stage,’ ‘stepping back into the story or page of a book,’ and ‘continuation of the journey’. (Lopez et al, 2014)…”

Randomized Waitlist-Control Trial of a Web-Based Stress-Management and Resiliency Program for Adolescent and Young Adult Cancer Survivors: Protocol for the Bounce Back Study

“…Their health-related quality of life may be poor, and they experience elevated levels of distress posttreatment [7][8][9][10]. Although acute distress symptoms can persist for several years after treatment, peak levels of distress typically coincide with the first few years of treatment completion [10,11]. These consequences combined may increase AYAs' risk for cancer-related morbidity and early mortality, yet targeted programs to support AYAs' ability to cope with stress in the years following treatment completion are lacking [12][13][14][15][16][17].…”