title: A brief report of caregiver needs and resource utilization during pediatric hematopoietic stem cell transplantation.
abstract: Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant. Parental caregivers (n = 161) completed an online survey. The most cited sources of information were the HSCT team (87.7%), books and other print materials (83.1%), and the Internet (81.5%). However, more than half of the respondents reported that finding resources and services was a problem. More than half identified managing the emotional and social impact of the transplant on their child, posttransplant and follow-up care, practical strategies for caregiving, maintaining the family, and taking care of themselves during this first year as important topics to address. Adequately and regularly assessing caregiver and family needs and providing resources to meet those needs, especially during transitions in care, are important components of transplant care.
authors.affiliation: School of Nursing, University of North Carolina at Chapel Hill, NC 27599-7460, USA. dmayer@unc.edu
authors.forename: Deborah K
authors.initials: DK
authors.lastname: Mayer
authors.forename: Hocine
authors.initials: H
authors.lastname: Tighiouart
authors.forename: Norma
authors.initials: N
authors.lastname: Terrin
authors.forename: Susan
authors.initials: S
authors.lastname: Stewart
authors.forename: Emily
authors.initials: E
authors.lastname: Peterson
authors.forename: Stefanie
authors.initials: S
authors.lastname: Jeruss
authors.forename: Susan K
authors.initials: SK
authors.lastname: Parsons
mesh_terms: D017028:Caregivers / Q000523:psychology*; D002648:Child; D006306:Health Surveys; D018380:Hematopoietic Stem Cell Transplantation / Q000379:methods*; D006801:Humans; D009369:Neoplasms / Q000601:surgery; D009862:Online Systems; D010290:Parents / Q000523:psychology; D012944:Social Support; D011795:Surveys and Questionnaires