Jaime M Preussler1,2, Lih-Wen Mau3,4, Navneet S Majhail5, Margaret Bevans6, Emilie Clancy3, Carolyn Messner7, Leslie Parran8, Kate A Pederson3, Stacy Stickney Ferguson3, Kent Walters9, Elizabeth A Murphy3, Ellen M Denzen3,4. 1. National Marrow Donor Program®/Be The Match®, 500 N. 5th St., Minneapolis, MN, USA. jpreussl@nmdp.org. 2. Center for International Blood and Marrow Transplant Research, Minneapolis, MN, USA. jpreussl@nmdp.org. 3. National Marrow Donor Program®/Be The Match®, 500 N. 5th St., Minneapolis, MN, USA. 4. Center for International Blood and Marrow Transplant Research, Minneapolis, MN, USA. 5. Blood and Marrow Transplant Program, Cleveland Clinic, Cleveland, OH, USA. 6. National Institutes of Health Office of Research on Women's Health, Bethesda, MD, USA. 7. CancerCare, New York, NY, USA. 8. University of Minnesota Medical Center, Minneapolis, MN, USA. 9. The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA.
Abstract
PURPOSE: Hematopoietic cell transplantation (HCT) often involves a long hospitalization and recovery period, with patients generally required to have a caregiver. This study aimed to identify transplant center (TC) requirements for a caregiver, describe challenges that impact caregiver availability, and identify potential solutions. METHODS: An exploratory sequential mixed-methods approach was used. Qualitative data was obtained from focus groups of TC social workers in the United States (US) (three focus groups; n = 15 total participants). Results informed the development of a national, web-based survey that was administered to the primary social worker contact at TCs in the National Marrow Donor Program (NMDP)/Be The Match Network (n = 133). RESULTS: Respondents included social workers from adult (n = 47) and pediatric (n = 19) TCs (response rate = 49%). The majority (89%) of both adult and pediatric TCs required a caregiver for a patient to proceed to transplant, but requirements varied in length of time, formality, transplant type, and HCT setting. Regardless of transplant type or patient population, social workers identified loss of caregiver income as the greatest challenge to caregiver availability, with the most common solution being allowing patients to have multiple caregivers throughout the transplant course. DISCUSSION: Caregiver availability is an important concern for patients considering and receiving HCT, and may be a barrier proceeding to HCT when a caregiver is unavailable. Results from this study highlight caregiver availability barriers and solutions of TCs across the US. These results can inform TCs about other center experiences with caregiver availability and identify potential practice changes for individual TCs.
PURPOSE: Hematopoietic cell transplantation (HCT) often involves a long hospitalization and recovery period, with patients generally required to have a caregiver. This study aimed to identify transplant center (TC) requirements for a caregiver, describe challenges that impact caregiver availability, and identify potential solutions. METHODS: An exploratory sequential mixed-methods approach was used. Qualitative data was obtained from focus groups of TC social workers in the United States (US) (three focus groups; n = 15 total participants). Results informed the development of a national, web-based survey that was administered to the primary social worker contact at TCs in the National Marrow Donor Program (NMDP)/Be The Match Network (n = 133). RESULTS: Respondents included social workers from adult (n = 47) and pediatric (n = 19) TCs (response rate = 49%). The majority (89%) of both adult and pediatric TCs required a caregiver for a patient to proceed to transplant, but requirements varied in length of time, formality, transplant type, and HCT setting. Regardless of transplant type or patient population, social workers identified loss of caregiver income as the greatest challenge to caregiver availability, with the most common solution being allowing patients to have multiple caregivers throughout the transplant course. DISCUSSION: Caregiver availability is an important concern for patients considering and receiving HCT, and may be a barrier proceeding to HCT when a caregiver is unavailable. Results from this study highlight caregiver availability barriers and solutions of TCs across the US. These results can inform TCs about other center experiences with caregiver availability and identify potential practice changes for individual TCs.
Entities:
Keywords:
Access to transplant; Caregiver; Caregiver availability; Hematopoietic cell transplantation
Authors: Laurel L Northouse; Maria C Katapodi; Lixin Song; Lingling Zhang; Darlene W Mood Journal: CA Cancer J Clin Date: 2010-08-13 Impact factor: 508.702
Authors: Hermioni L Amonoo; Emma C Deary; Lauren E Harnedy; Elizabeth P Daskalakis; Lauren Goldschen; Marie C Desir; Richard A Newcomb; Annie C Wang; Kofi Boateng; Ashley M Nelson; Areej El Jawahri Journal: Transplant Cell Ther Date: 2022-05-13