Children surviving brain tumors have the potential to outlive their parents without having attained independent living. The uncertainty associated with prognosis for survivorship related to potential multifocal dysfunction dependent upon tumor type, location, and treatment is difficult for families. Late medical sequelae affecting neurocognitive, physical, and psychosocial areas that interfere with milestone achievement (e.g., higher education, employment, life partnership) and independence often become evident when survivors reach their twenties and childhood services are not available. Expectations for those suffering neuronal insult in childhood may incorporate a caregiver's search for and utilization of resources geared toward remediation or other interventions aimed at increasing the neurocognitive, physical, and/or psychosocial potential of the child. Currently, the extent of neuroplasticity in childhood and the potential to compensate for deficits after neural insult from tumor, surgery or radiation are not well known, but we may gain better definition as increasing numbers of survivors of childhood brain tumors participate in programs aimed at various forms of remediation. This project proposes a secondary analysis of qualitative and quantitative data from a large study of mother- caregivers and their adolescent and young adult survivors of childhood brain tumors. A mixed methodological analysis will investigate caregiver expectations for survivor cognitive, physical, and psychosocial functioning as well as the association between those expectations and current survivor function. Subsequently, the relationship of perceived caregiver demands with caregiver expectations and survivor function will be explored. This project aims to describe caregiver expectations for survivor function, which will enable providers to explicitly acknowledge expectations for parents to renegotiate caregiving. The long term goal of the applicant's program of research is to improve demands experienced by the caregiver and other aspects of family functioning including decision-making during survivorship, and the quality of life of the survivors, caregivers, and other family members. As such, the goals of this project are in consort with those of the NINR Strategic Plan, namely communication, decision-making, caregiving, and quality of life.
Although it has become the norm that children surviving brain tumors will outlive their parents, many cannot live independently. Parental functional expectations may guide desire for interventions that might compensate for cognitive, physical and/or psychosocial dysfunctions. Understanding parental expectations may lead toward increased accession of interventions to promote indepedence.
|Lucas, Matthew S; Barakat, Lamia P; Jones, Nora L et al. (2014) Expectations for function and independence by childhood brain tumors survivors and their mothers. Narrat Inq Bioeth 4:233-51|