title: Building Bridges From Hospital to Home: Understanding the Transition Experience for the Newly Diagnosed Pediatric Oncology Patient.
abstract: Caregivers of pediatric oncology patients are expected to understand and adhere to a complex medical plan of care while at home; yet little is known about how to assess and evaluate the caregivers' abilities to adequately meet these demands. The purpose of this study was to describe the issues and daily challenges faced by caregivers as they transition from hospital to home after their child's cancer diagnosis. Patients and caregivers received a home visit by an expert pediatric oncology nurse within 72 hours postdischarge after initial diagnosis. The nursing narrative notes from these visits were analyzed using content analysis. Four explanatory themes emerged: (1) "We're doing okay," (2) "This isn't going so well," (3) "I could use a little help with this," and (4) "An RN in the house makes you feel safe and know what is correct." These analyses revealed many caregivers achieved mastery of caring for the child at home; however, an overwhelming majority of caregivers expressed questions or concerns to the nurse during the home visit, even those achieving mastery of care. A home visit by an expert pediatric oncology nurse assisted the caregiver in transitioning to caring for the child at home. Such programs should be considered when planning transition programs from hospital to home.
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Branowicki
authors.affiliation: Boston Children's Hospital, Boston, MA, USA Boston College, Boston, MA, USA vessey@bc.edu.
authors.forename: Judith A
authors.initials: JA
authors.lastname: Vessey
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Kendal L Jackson
authors.initials: KL
authors.lastname: Temple
authors.affiliation: Boston Children's Hospital, Boston, MA, USA Boston College, Boston, MA, USA.
authors.forename: Amanda J
authors.initials: AJ
authors.lastname: Lulloff
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000193:education* / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D022143:Family Nursing; D005260:Female; D006699:Home Care Services / Q000592:standards*; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D009511:New England; D009859:Oncology Nursing / Q000193:education / Q000379:methods*; D010371:Pediatric Nursing / Q000193:education / Q000379:methods*; D017410:Practice Guidelines as Topic; D013315:Stress, Psychological; D055815:Young Adult
keywords: family-centered care; oncology; pediatric; transition from hospital to home