title: 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.
  
  
  METHODS
  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.
authors: Department of Family and Community Health.
authors: Janet A
authors: JA
authors: Deatrick
authors: Children's Hospital of Philadelphia.
authors: Wendy
authors: W
authors: Hobbie
authors: Children's Hospital of Philadelphia.
authors: Sue
authors: S
authors: Ogle
authors: Children's Hospital of Philadelphia.
authors: Michael J
authors: MJ
authors: Fisher
authors: Children's Hospital of Philadelphia.
authors: Lamia
authors: L
authors: Barakat
authors: College of Nursing and Health Professionals, Drexel University.
authors: Thomas
authors: T
authors: Hardie
authors: Children's Hospital of Philadelphia.
authors: Maureen
authors: M
authors: Reilly
authors: Children's Hospital of Philadelphia.
authors: Yimei
authors: Y
authors: Li
authors: Children's Hospital of Philadelphia.
authors: Jill P
authors: JP
authors: Ginsberg
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000150:complications*; D017028:Caregivers / Q000523:psychology* / Q000592:standards; D005192:Family Health; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009035:Mothers / Q000523:psychology*; D011788:Quality of Life; D012720:Severity of Illness Index; D012959:Socioeconomic Factors; D017741:Survivors; D013995:Time; D055815:Young Adult
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