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: 1.04). 01/2008; 25(3):164-74. DOI: 10.1177/1043454208315547
Source: PubMed

ABSTRACT 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.

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    ABSTRACT: To review the literature investigating the social competence outcomes of child and adolescent survivors of brain tumors. Twenty articles published between 2000 and 2009 were accessed using PsycInfo and PubMed and reviewed for their findings related to three hypothesized levels of social competence (i.e., social adjustment, social performance, social skills). Current evidence indicates that childhood brain tumor survivors experience decreased social adjustment following treatment. Inconsistencies among studies continue to be an obstacle for advancing the field. The operationalization of social competence requires greater attention to facilitate comparability between studies (e.g., social adjustment, social performance, social skills). The effects of child, familial, and treatment factors and their relationships are still not well understood. There is a lack of theory driven research. Many childhood brain tumor survivors experience deficits in social competence at the level of social adjustment. These deficits worsen with time. Little is known about more rudimentary levels of social competence such as social skills or social performance. This information is needed to guide the development of social intervention programs.
    Supportive Care in Cancer 12/2010; 18(12):1499-513. · 2.09 Impact Factor
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    ABSTRACT: Survivors of pediatric brain tumors (BTs) are at-risk for late effects which may affect mobility within and access to the physical environment. This study examined the prevalence of and risk factors for restricted environmental access in survivors of childhood BTs and investigated the associations between reduced environmental access, health-related quality of life (HRQOL), and survivors' social functioning. In-home evaluations were completed for 78 BT survivors and 78 population-based controls matched on age, sex, and zip-code. Chi-square tests and multivariable logistic regression models were used to calculate odds ratios (ORs) and 95 % confidence intervals (CIs) for poor environmental access and reduced HRQOL. The median age of survivors was 22 years at the time of study. Compared to controls, survivors were more likely to report avoiding most dimensions of their physical environment, including a single flight of stairs (p < 0.001), uneven surfaces (p < 0.001), traveling alone (p = 0.01), and traveling to unfamiliar places (p = 0.001). Overall, survivors were 4.8 times more likely to report poor environmental access (95 % CI 2.0-11.5, p < 0.001). In survivors, poor environmental access was associated with reduced physical function (OR = 3.6, 95 % CI 1.0-12.8, p = 0.04), general health (OR = 6.0, 95 % CI 1.8-20.6, p = 0.002), and social functioning (OR = 4.3, 95 % CI 1.1-17.3, p = 0.03). Adult survivors of pediatric BTs were more likely to avoid their physical environment than matched controls. Restricted environmental access was associated with reduced HRQOL and diminished social functioning. Interventions directed at improving physical mobility may have significant impact on survivor quality of life.
    Journal of Neuro-Oncology 11/2012; · 3.12 Impact Factor
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    ABSTRACT: Purpose: Pediatric brain tumors are the second most common cancer diagnosis in individuals under age 20 and research has documented significant neurocognitive, psychosocial, and emotional late effects. Associations among these deficits have not been adequately considered and the role of survivors' coping with stress in relation to deficits is unknown. Further, research has yet to examine neurobiological processes related to neurocognitive, psychosocial, and emotional difficulties in survivors through the use of functional neuroimaging. Method: Questionnaire measures and functional neuroimaging were used to examine the neurocognitive, psychosocial, and emotional functioning and coping responses of survivors of pediatric brain tumors (N = 17; age 8-16) and healthy children (N = 15). Results: Survivors experienced elevated levels of psychosocial and behavioral/emotional difficulties relative to healthy controls and normative data. Increases in brain activation in prefrontal and other anterior regions in response to a working memory task were associated with better psychosocial functioning, use of engagement coping strategies, and less use of disengagement coping strategies. Regression analyses suggest coping accounts for a significant portion of the association between brain activation and behavioral/emotional functioning. Conclusions: This study extends late-effects research by examining neurobiological processes associated with psychosocial and emotional difficulties. These findings contribute to our understanding of difficulties in survivors and provide a foundation for research exploring these associations and mediators of deficits in future longitudinal studies.
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