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: 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: 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