Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

Abstract

Objective Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. Method Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14–40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. Results The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence. Conclusions For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

Expectations for Function and Independence by Childhood Brain Tumors Survivors and Their Mothers

“…These families need help in supporting their shared expectations and finding appropriate resources that will support the survivor while still under the care of the family, the survivor when the family can no longer provide care, and the family while they do provide care. The health of caregivers plays a major role in family life, including the status of family management and the survivor’s health (Deatrick et al, 2013). …”

“…These rating systems were adapted for this population and have excellent inter–rater reliability (Deatrick et al, 2013). Two clinicians extracted data from the survivor’s medical chart and independently provided the scores.…”

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

“…The functionality of the primary caregiver affects the ability of the rest of the family to function. 21 …”

“…With rare disorders that manifest in childhood, parents may live as long-term primary caregivers, even after their child enters adulthood. 21 Although many of the basic care demands are similar to those of children with more common conditions, rare disease caregivers face additional challenges associated with the complexities of care needs, assistance in everyday responsibilities, and fostering psychosocial health for all concerned. 22 There are personal, societal, medical, and institutional challenges that impede transition to independence, and families must work to incorporate these experiences into ongoing family life for years to come.…”

“…22 There are personal, societal, medical, and institutional challenges that impede transition to independence, and families must work to incorporate these experiences into ongoing family life for years to come. 19,21 Many family caregivers of children with rare neuromuscular disease find that extended care requires navigating the complex, frustrating, and fragmented array of services associated with transition of care from childhood to adulthood. 19 Family caregivers balance leading a 'normal life' with grieving daily, and the desire to appropriately discuss the future, death, and dying with others.…”