title: "Care that matters": Family-centered care, caregiving burden, and adaptation in parents of children with cancer.
abstract: BACKGROUND
  Family-centered care (FCC) is a health-care delivery approach endorsing the support and participation of families. To date, little research has addressed the associations between FCC and adaptation outcomes specifically in the context of pediatric cancer. The main objective of this research was to identify the direct and indirect associations, through caregiving burden, between parents' FCC and quality of life (QoL) and life satisfaction.
  
  
  METHODS
  Participants were 204 parents of children diagnosed with cancer. Parents answered the Measure of Processes of Care questionnaire to evaluate their perceptions of FCC in 2 domains: family-centered services and provision of general information. Perceptions of caregiving burden (Revised Burden Measure), QoL (EUROHIS-QoL-8), and life satisfaction (Satisfaction with Life Scale) were also assessed. Pediatric oncologists provided information on the child's diagnosis and treatment status.
  
  
  RESULTS
  Findings showed that when parents perceived their children's health care as more family-centered, they also reported lower caregiving burden. Family-centered services were indirectly linked to QoL and life satisfaction through caregiving burden.
  
  
  CONCLUSIONS
  This research suggests that the way parents perceive formal care, namely as being more or less family-centered, may influence the burden they experience as caregivers of a child with cancer and, indirectly, their adaptation. These findings highlight the relevance of gaining greater understanding of the interaction between the family and the health-care systems in the context of pediatric cancer.
authors.affiliation: Faculdade de Psicologia, Universidade de Lisboa.
authors.forename: Carla
authors.identifier: 0000-0002-9125-0106
authors.initials: C
authors.lastname: Crespo
authors.affiliation: Faculdade de Psicologia e de Ciências da Educação, Universidade de Coimbra.
authors.forename: Susana
authors.initials: S
authors.lastname: Santos
authors.affiliation: Faculdade de Psicologia, Universidade de Lisboa.
authors.forename: Ana
authors.initials: A
authors.lastname: Tavares
authors.affiliation: Faculdade de Psicologia, Universidade de Lisboa.
authors.forename: Ágata
authors.initials: Á
authors.lastname: Salvador
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy; D018802:Patient-Centered Care / Q000379:methods* / Q000706:statistics & numerical data; D011594:Psychometrics / Q000295:instrumentation / Q000379:methods / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires