The psychosocial impacts on families of low-incidence, complex conditions in children: the case of craniopharyngioma.

This paper reports qualitative data from a multidisciplinary, multimethod Craniopharyngioma Child and Family Impact Study conducted at the Royal Children's Hospital, Melbourne. The study aimed to assess the psychosocial impact on children and their families of a childhood craniopharyngioma, a congenital non-hereditary brain tumour that is 'benign' by histology, but often locally invasive. The condition may result in significant morbidity and mortality due to location in the brain, which tends to precipitate multisystemic abnormalities either at the time of presentation, or in conjunction with treatment. The condition has a high survival rate with approximately 90 percent of children alive ten years after diagnosis and although the diagnosis and treatment of craniopharyngioma may result in severe physical and emotional burden for the child and family, there have been few studies to date on the psychosocial impact of this multifaceted condition. Interviews incorporating a purpose-designed Craniopharyngioma Symptom and Treatment Impact Scale were held with 13 families. Impacts on both the family and the children were identified as well as information about the child's coping capacity; parents' fear, uncertainty and trust; family managing and mastery; the experience of hospital; service use and illness specific support. Implications for social work practice are discussed.