title: Maternal Caregiving Demands for Adolescent and Young Adult Survivors of Pediatric Brain Tumors.
abstract: OBJECTIVE
  To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families.
  
  
  METHODS
  A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life.
  
  
  METHODS
  Home interviews.
  
  
  METHODS
  A purposive sample of 46 maternal caregivers was selected from participants in the larger study.
  
  
  METHODS
  Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai's framework describing the components of primary caregiving.
  
  
  METHODS
  Caregiving demands.
  
  
  RESULTS
  Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews.
  
  
  CONCLUSIONS
  Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified.
  
  
  CONCLUSIONS
  The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health.
authors.affiliation: Memorial Sloan-Kettering Cancer Center in New York, NY.
authors.forename: Erica
authors.initials: E
authors.lastname: Palma
authors.affiliation: School of Nursing at the University of Pennsylvania.
authors.forename: Janet A
authors.initials: JA
authors.lastname: Deatrick
authors.affiliation: The Children's Hospital, Philadelphia, PA.
authors.forename: Wendy L
authors.initials: WL
authors.lastname: Hobbie
authors.affiliation: Children's Hospital of Philadelphia in Pennsylvania.
authors.forename: Sue K
authors.initials: SK
authors.lastname: Ogle
authors.affiliation: Department of Child and Family Nursing at St. Luke's International University School of Nursing in Tokyo, Japan.
authors.forename: Kyoko
authors.initials: K
authors.lastname: Kobayashi
authors.affiliation: School of Nursing and the Centers for Global Women's Health and Health Equity Research, both at the University of Pennsylvania.
authors.forename: Linda
authors.initials: L
authors.lastname: Maldonado
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000451:nursing* / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000451:nursing* / Q000523:psychology; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D015143:Philadelphia; D011788:Quality of Life; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D017741:Survivors; D055815:Young Adult
keywords: caregiver tasks; caregiving burden; caregiving demands; parents; pediatric brain tumors; qualitative research