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.

Figure 1

Perceived competence for caregivers of childhood brain tumor survivors. Depicted are the domains for the conceptual model and measures for the study. Measures are (1) Pediatric oncology Quality of Life Measure (POQOL); (2) Survivor Demographic Form; (3) Treatment intensity; (4) Medical Sequelae; (5) State–Trait Anxiety Inventory (STAI); (6) Brief Symptom Inventory (BSI) Global Severity Index; (7) (Post Traumatic Stress) Reaction Index (RI); (8) Medical Outcomes Study Short Form 36 Health Survey (SF 36); (9) parent Demographic Form; (10) Family Assessment Device (FAD); (11) Bakas Caregiver Outcomes Scale (BOCOS); (12) Family Management Measure (FaMM) Condition Management Ability Scale.

Figure 2

Final model explaining caregiving competence: survivor, caregiver, and family factors. All the paths are significant at the p < .01 except the effect of income on family functioning is significant at p = .052.