I'll show them: the social construction of (in)competence in survivors of childhood brain tumors.
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: The purpose of this study was to investigate the experience of surviving cancer for Latino adolescents and young adult (AYA) survivors of pediatric cancer. Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with 14 Latino AYA survivors (16-29 years) diagnosed as young children (0-15 years) and at least 1 year post-treatment RESULTS: Four essential themes about the Latino AYA experience as childhood cancer survivors emerged from analysis: borrowed strength of family and hospital staff; sustained positive attitude; perceived vulnerability; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. These emerging adults were able to focus on the positive lessons learned from their cancer experience such as the importance of personal relationships and an optimistic outlook on life. Yet, it was clear that long after these survivors had been labeled "cured" by the medical team, cancer continued to be a large part of their existence. The results indicate that these emerging adults faced their cancer experience with optimism, leaned on relationships with family and health care professionals, and demonstrated resilience through their cancer treatment and beyond. This unique description of Latino survivors' experiences demonstrates that they simultaneously face uncertainty and identify positive influences of the cancer experience in particular unwavering familial support. These findings provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long-term health and well being.Journal of Cancer Survivorship 09/2013; · 3.57 Impact Factor
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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.Journal of Cancer Survivorship 11/2013; · 3.57 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.Child neuropsychology : a journal on normal and abnormal development in childhood and adolescence. 06/2014;