title: Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability.
abstract: BACKGROUND
  Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.
  
  
  OBJECTIVE
  To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.
  
  
  METHODS
  We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ≥21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.
  
  
  RESULTS
  Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.
  
  
  CONCLUSIONS
  Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.
authors.affiliation: Mongan Institute for Health Policy, Massachusetts General Hospital, USA; Department of Medicine, Harvard Medical School, USA. Electronic address: liezzoni@mgh.harvard.edu.
authors.forename: Lisa I
authors.initials: LI
authors.lastname: Iezzoni
authors.affiliation: Mongan Institute for Health Policy, Massachusetts General Hospital, USA.
authors.forename: Amy J
authors.initials: AJ
authors.lastname: Wint
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital for Children, USA; Department of Pediatrics, Harvard Medical School, USA.
authors.forename: Karen A
authors.initials: KA
authors.lastname: Kuhlthau
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital for Children, USA; Department of Pediatrics, Harvard Medical School, USA.
authors.forename: Alexy Arauz
authors.initials: AA
authors.lastname: Boudreau
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D001290:Attitude; D017028:Caregivers; D002648:Child; D003469:Culture; D006233:Persons with Disabilities; D004644:Emotions; D005191:Family Characteristics; D005260:Female; D006801:Humans; D008297:Male; D011939:Mental Recall; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents; D010465:Perception; D012737:Sex Factors; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
keywords: Caregiving; Child; Disability; Parent