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A Brief Report of Caregiver Needs and Resource Utilization During Pediatric Hematopoietic Stem Cell Transplantation

School of Nursing, University of North Carolina at Chapel Hill, dmayer{at}unc.edu, UNC Lineberger Comprehensive Cancer Center

Hocine Tighiouart, MS

Institute for Clinical Research and Health Policy Studies at the Tufts Medical Center

Norma Terrin, PhD

Tufts University School of Medicine and the Sackler School of Graduate Biomedical Sciences, Institute for Clinical Research and Health Policy Studies at Tufts Medical Center

Susan Stewart, BA

Blood & Marrow Transplant Information Network, BMT Newsletter

Emily Peterson, BA

Office of Patient Advocacy of the National Marrow Donor Program

Stefanie Jeruss, MS

Institute for Clinical Research and Health Policy Studies at the Tufts Medical Center

Susan K. Parsons, MD, MRP

Health Institute and the Center on Child and Family Outcomes at the Institute for Clinical Research and Health Policy Studies at Tufts Medical Center, Tufts University School of Medicine

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.

Key Words: needs assessment • caregiving • bone marrow transplantation • adaptation • Internet • online survey

Journal of Pediatric Oncology Nursing, Vol. 26, No. 4, 223-229 (2009)
DOI: 10.1177/1043454209340409


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