I'll Show Them: The Social Construction of (In)Competence in Survivors of Childhood Brain Tumors

The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada M5G 1X8.
Journal of Pediatric Oncology Nursing (Impact Factor: 0.9). 03/2008; 25(3):164-74. DOI: 10.1177/1043454208315547
Source: PubMed


Multimodal therapy for the treatment of childhood cancer has resulted in increased survival rates, yet as growing cohorts of children mature, late effects are becoming apparent. Specifically, brain tumor survivors tend to have poor social skills, peer relationship problems, academic difficulties, and delayed college entry. This article addresses findings specific to the unique experience of childhood cancer survivors as they transition from adolescence to adulthood. Qualitative methods involving focus groups and in-depth interviews with 14 childhood cancer survivors and 22 family members were used. The dialectic of incompetence/competence pervaded all narratives. Contradictory concepts of integration/ isolation, realistic/unrealistic goals, and the need for special help/no help were underscored by respondents. The struggle to deal with these contradictory factors led to the simultaneous resistance and acceptance of feelings of competence.

Download full-text


Available from: Katherine Boydell, Mar 11, 2015
    • "They were teased and bullied because of their physical appearance or cognitive disabilities, which affected their personal well-being, self-esteem and self-confidence (Boydell et al., 2008; Vance et al., 2004; Chen et al., 2008; Macartney et al., 2014a; Bruce et al., 2008). One child commented, "
    [Show abstract] [Hide abstract]
    ABSTRACT: The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors. Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included. Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help. Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area. Copyright © 2015 Elsevier Ltd. All rights reserved.
    No preview · Article · Jul 2015 · European journal of oncology nursing: the official journal of European Oncology Nursing Society
  • Source
    • "This study provides evidence that social isolation can develop among young adult survivors who previously had full and meaningful social lives and that not fitting in and reaching milestones common in young adulthood (career, marriage, children) are contributing factors. The importance of peer acceptance and support during adolescence is well recognized, but it also appears that childhood cancer survivors continue to compare themselves to their peers well into their young adult years [29, 62]. This highlights the significance of socially constructed ideas of what constitutes a happy and fulfilling life and that survivors compare themselves with mainstream ideas and messages of normal and different. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.
    Full-text · Article · Nov 2013 · Journal of Cancer Survivorship
  • Source

    Preview · Article ·
Show more