Caregiver functional expectations for survivors of childhood brain tumors.

摘要

While most children surviving a brain tumor now do survive and live into adulthood, not all are able to live independently. The reasons that young adult survivors are not able to be independent are likely multifactorial and have primarily been investigated in terms of the physical, cognitive, and (less often) psychosocial disease- and treatment-related sequelae. Mother-caregivers' past or current expectations for function of adolescent/young adult-survivors of childhood brain tumors are not known, nor is how expectations affect outcomes of the survivor (independence) and family (continued caregiving). What is known is that we are not addressing expectations. In order to make better sense of the expectations for survivor function by those living in it, I used a mixed methodologic approach to conduct a secondary analysis of both qualitative and quantitative data from 40 mother-caregiver and adolescent/young adult-survivor dyads. I found that caregiver expectations and meaning making, in both individual and family contexts, play important roles identifying changes in survivor developmental trajectory and managing the survivor's changing conditions and development, the family, and the self. Expectation findings may therefore be more meaningful when viewed from a family-based rather than individual perspective. Four dyadic narrative profiles of expectations identify either convergent or non-convergent expectations about a more or less optimistic future, and, across dyads, potentially identify those needing long-term help when the caregiver can no longer provide caregiving. Finally, the families made meaning about the brain tumor with (non-)religious framings and incorporated traditionally negative components of the survivorship experience into their respective understandings and meanings about what is normative for the family, but none of the families found meaning from the biomedical realm. This project moves the discussion about childhood brain tumor survivorship toward more rigorous methodologic approaches to family science with the intention to improve outcomes for families that are based upon the goals, needs, and abilities of the families themselves. Clinicians can then listen to and acknowledge families' social realities in order to accommodate the ongoing challenges posed by the brain tumor and its treatment.