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.

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies

“…The majority of the studies included both males and females. [24][25][26][27][28][29][30][31][32][33][34] Three studies did not indicate the gender distribution, [35][36][37] and the remaining two studies reported the inclusion of either all females 38 or all males. 39 The age of participants included in the studies ranged from 13 to 38 years old at the time of interview.…”

“…Six studies reported the participants' time since diagnosis, 26,27,29,31,32,34 which ranged between 1 and 36 years, and one study 36 indicated only that participants were at least five years postdiagnosis. Most studies consisted of survivors of various cancer diagnoses, although two focused on only one specific cancer type (brain cancer or leukemia) 24,35 and one did not indicate the cancer type. 29 One study used a mixed (qualitative and quantitative) methods design, 27 although the quantitative results are not included in this review; the remaining studies used only qualitative methods.…”

“…Although YASCC reported a host of physical problems, physical issues do not appear to be an overwhelming burden compared to other domains of HRQOL. YASCC reported increased vulnerability to common illnesses such as allergies and dental problems, 36 poor vision, 26,36 hearing loss, 26 short stature and balance problems, 26,35,36 arthritis, sensitive skin and underproductive thyroid, 24 deficits in endocrine and motor-sensory functioning, and semi-paralysis. 26 Survivors also suffered from chronic diseases and symptoms such as diabetes, high blood pressure, and weight loss, 29 as well as fatigue 26,30 and chronic back and bone pain.…”

“…For example, survivors experienced changes in hair loss, 26,35,37 stature, 26,35 and weight 37 and acquired scars that served as reminders of their cancer experience. 28,35,37 Survivors indicated that their appearance affected how peers perceived them, such that the more ''normal'' they appeared, the more they felt accepted. 35 Body appearance affected survivors' selfimage, self-esteem, and feelings of competence.…”

“…28,35,37 Survivors indicated that their appearance affected how peers perceived them, such that the more ''normal'' they appeared, the more they felt accepted. 35 Body appearance affected survivors' selfimage, self-esteem, and feelings of competence. 35 In fact, some females reported eating disorders following treatment, and both males and females noted concern regarding their ability to meet gender norms.…”