Supportive Care in Cancer

, Volume 27, Issue 11, pp 4253–4264 | Cite as

Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice

  • Jaime M. PreusslerEmail author
  • Lih-Wen Mau
  • Navneet S. Majhail
  • Margaret Bevans
  • Emilie Clancy
  • Carolyn Messner
  • Leslie Parran
  • Kate A. Pederson
  • Stacy Stickney Ferguson
  • Kent Walters
  • Elizabeth A. Murphy
  • Ellen M. Denzen
Original Article



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.


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).


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.


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.


Hematopoietic cell transplantation Caregiver Caregiver availability Access to transplant 



We thank the National Marrow Donor Program’s System Capacity Initiative Program for supporting this study. We also thank William Vaughn, MD (University of Alabama), for participating in the study protocol team; Diane W. Carr, MPH (NMDP), and Viengneesee Thao, MS, for their help in reaching out to potential survey participants; Tammy Payton (NMDP) for her coding of focus group responses; and Linda J. Burns, MD, for critical review of the manuscript. Finally, we thank the social workers who participated in the focus groups and survey.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.


CIBMTR® (Center for International Blood and Marrow Transplant Research®) is a research collaboration between the National Marrow Donor Program®/Be The Match® and Medical College of Wisconsin. The CIBMTR is supported by Public Health Service Grant/Cooperative Agreement U24-CA76518 from the National Cancer Institute (NCI), the National Heart, Lung and Blood Institute (NHLBI), and the National Institute of Allergy and Infectious Diseases (NIAID); a Grant/Cooperative Agreement 5U01HL069294 from NHLBI and NCI; a contract HHSH234200637015C with Health Resources and Services Administration (HRSA/DHHS); two Grants N00014-06-1-0704 and N00014-08-1-0058 from the Office of Naval Research; and grants from AABB; Allos, Inc.; Amgen, Inc.; Anonymous donation to the Medical College of Wisconsin; Astellas Pharma US, Inc.; Be The Match Foundation; Biogen IDEC; BioMarin Pharmaceutical, Inc.; Biovitrum AB; BloodCenter of Wisconsin; Blue Cross and Blue Shield Association; Bone Marrow Foundation; Buchanan Family Foundation; CaridianBCT; Celgene Corporation; CellGenix, GmbH; Children’s Leukemia Research Association; ClinImmune Labs; CTI Clinical Trial and Consulting Services; Eisai, Inc.; Genentech, Inc.; Genzyme Corporation; Histogenetics, Inc.; HKS Medical Information Systems; Hospira, Inc.; Kirin Brewery Co., Ltd.; The Leukemia & Lymphoma Society; Merck & Company; The Medical College of Wisconsin; Millennium Pharmaceuticals, Inc.; Miller Pharmacal Group; Milliman USA, Inc.; Miltenyi Biotec, Inc.; National Marrow Donor Program; Nature Publishing Group; Novartis Oncology; Oncology Nursing Society; Osiris Therapeutics, Inc.; Otsuka America Pharmaceutical, Inc.; Pall Life Sciences; Pfizer Inc.; Schering Corporation; Sigma-Tau Pharmaceuticals; Soligenix, Inc.; StemCyte, Inc.; StemSoft Software, Inc.; Sysmex America, Inc.; THERAKOS, Inc.; Vidacare Corporation; ViraCor Laboratories; ViroPharma, Inc.; and Wellpoint, Inc. The views expressed in this article do not reflect the official policy or position of the National Institutes of Health, the Department of the Navy, the Department of Defense, or any other agency of the U.S. Government. The Health Services Research Program is supported in part by Health Resources and Services Administration Contract No. HHSH234200637018C. The views expressed in this article do not reflect the official policy or position of the Health Resources and Services Administration or the National Marrow Donor Program/Be The Match®.


  1. 1.
    Von Ah D, Spath M, Nielsen A, Fife B (2015) The caregiver’s role across the bone marrow transplantation trajectory. Cancer Nurs:1.
  2. 2.
    Bevans MF, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4):398–403. CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    Cooke L, Grant M, Eldredge DH, Maziarz RT, Nail LM (2011) Informal caregiving in hematopoietic blood and marrow transplant patients. Eur J Oncol Nurs 15(5):500–507. CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Deshields TL, Rihanek A, Potter P, Zhang Q, Kuhrik M, Kuhrik N, O’Neill JA (2012) Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers. Support Care Cancer 20(2):349–356. CrossRefPubMedGoogle Scholar
  5. 5.
    Morrison V, Henderson BJ, Zinovieff F, Davies G, Cartmell R, Hall A, Gollins S (2012) Common, important, and unmet needs of cancer outpatients. Eur J Oncol Nurs 16(2):115–123. CrossRefPubMedGoogle Scholar
  6. 6.
    Foster LW, McLellan LJ, Rybicki LA, Dabney J, Welsh E, Bolwell BJ (2006) Allogeneic BMT and patient eligibility based on psychosocial criteria: a survey of BMT professionals. Bone Marrow Transplant 37(2):223–228. CrossRefPubMedGoogle Scholar
  7. 7.
    Bangerter LR, Griffin JM, Langer S, Hasan B, Kim W, Murad MH, Khera N (2018) The effect of psychosocial interventions on outcomes for caregivers of hematopoietic cell transplant patients. Curr Hematol Malig Rep 13(3):155–163. CrossRefPubMedGoogle Scholar
  8. 8.
    Frey P, Stinson T, Siston A, Knight SJ, Ferdman E, Traynor A, O’Gara K, Rademaker A, Bennett C, Winter JN (2002) Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplant 30(11):741–748. CrossRefPubMedGoogle Scholar
  9. 9.
    Meisenberg BR, Ferran K, Hollenbach K, Brehm T, Jollon J, Piro LD (1998) Reduced charges and costs associated with outpatient autologous stem cell transplantation. Bone Marrow Transplant 21(9):927–932CrossRefGoogle Scholar
  10. 10.
    Faucher C, Le Corroller Soriano AG, Esterni B et al (2012) Randomized study of early hospital discharge following autologous blood SCT: medical outcomes and hospital costs. Bone Marrow Transplant 47(4):549–555. CrossRefPubMedGoogle Scholar
  11. 11.
    Ferrara F, Palmieri S, Viola A, Copia C, Schiavone EM, de Simone M, Pocali B, D’Amico MR, Annunziata M, Mele G (2004) Outpatient-based peripheral blood stem cell transplantation for patients with multiple myeloma. Hematol J 5(3):222–226. CrossRefPubMedGoogle Scholar
  12. 12.
    Cooke L, Grant M, Gemmill R (2012) Discharge needs of allogeneic transplantation recipients. Clin J Oncol Nurs 16(4):E142–E149CrossRefGoogle Scholar
  13. 13.
    Rini C, Symes Y, Campo RA, Wu LM, Austin J (2015) I keep my problems to myself: negative social network orientation, social resources, and health-related quality of life in cancer survivors. Ann Behav Med 50:385–396. CrossRefGoogle Scholar
  14. 14.
    Meehan K, Fitzmaurie T, Root L, Kimtis E, Patchett L, Hill J (2006) The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients. J Support Oncol 4(4):187–190PubMedGoogle Scholar
  15. 15.
    Foster LW, Mclellan LJ, Rybicki LA, Sassano DA, Hsu A, Bolwell BJ (2005) Survival of patients who have undergone allogeneic bone marrow transplantation: the relative importance of in-hospital lay care-partner support. J Psychosoc Oncol 22(2):1–20CrossRefGoogle Scholar
  16. 16.
    Braamse AMJ, Gerrits MMJG, van Meijel B, Visser O, van Oppen P, Boenink AD, Cuijpers P, Huijgens PC, Beekman ATF, Dekker J (2012) Predictors of health-related quality of life in patients treated with auto- and allo-SCT for hematological malignancies. Bone Marrow Transplant 47(6):757–769. CrossRefPubMedGoogle Scholar
  17. 17.
    Hochhausen N, Altmaier EM, McQuellon R, Davies SM, Papadopolous E, Carter S, Henslee-Downey J (2007) Social support, optimism, and self-efficacy predict physical and emotional well-being after bone marrow transplantation. J Psychosoc Oncol 25(1):87–101. CrossRefPubMedGoogle Scholar
  18. 18.
    Applebaum AJ, Stein EM, Lord-Bessen J, Pessin H, Rosenfeld B, Breitbart W (2014) Optimism, social support, and mental health outcomes in patients with advanced cancer. Psycho-Oncology 23(3):299–306. CrossRefPubMedGoogle Scholar
  19. 19.
    de Tejada MG-S, Bilbao A, Baré M et al (2016) Association of social support, functional status, and psychological variables with changes in health-related quality of life outcomes in patients with colorectal cancer. Psycho-Oncology 25(8):891–897. CrossRefGoogle Scholar
  20. 20.
    Liang Y, Wang H, Niu M, Zhu X, Cai J, Wang X (2018) Longitudinal analysis of the relationships between social support and health-related quality of life in hematopoietic stem cell transplant recipients. Cancer Nurs:1. CrossRefGoogle Scholar
  21. 21.
    Rodrigue JR, Pearman TP, Moreb J (1999) Morbidity and mortality following bone marrow transplantation: predictive U. Int J Behav Med 6(3):241–254CrossRefGoogle Scholar
  22. 22.
    German D, Latkin CA (2012) Social stability and health: exploring multidimensional social disadvantage. J Urban Health 89(1):19–35. CrossRefPubMedGoogle Scholar
  23. 23.
    Syrjala KL, Chapko MK, Vitaliano PP, Cummings C, Sullivan KM (1993) Recovery after allogeneic marrow transplantation: prospective study of predictors of long-term physical and psychosocial functioning. Bone Marrow Transplant 11(4):319–327PubMedGoogle Scholar
  24. 24.
    Beattie S, Lebel S (2011) The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psycho-Oncology 20(11):1137–1150. CrossRefPubMedGoogle Scholar
  25. 25.
    Sundaramurthi T, Wehrlen L, Friedman E, Thomas S, Bevans M (2017) Hematopoietic stem cell transplantation recipient and caregiver factors affecting length of stay and readmission. Oncol Nurs Forum 44(5):571–579. CrossRefPubMedGoogle Scholar
  26. 26.
    Spring L, Li S, Soiffer RJ, Antin JH, Alyea EP, Glotzbecker B (2015) Risk factors for readmission after allogeneic hematopoietic stem cell transplantation and impact on overall survival. Biol Blood Marrow Transplant 21(3):509–516. CrossRefPubMedGoogle Scholar
  27. 27.
    McDiarmid S, Hutton B, Atkins H, Bence-Bruckler I, Bredeson C, Sabri E, Huebsch L (2010) Performing allogeneic and autologous hematopoietic SCT in the outpatient setting: effects on infectious complications and early transplant outcomes. Bone Marrow Transplant 45(7):1220–1226. CrossRefPubMedGoogle Scholar
  28. 28.
    Gemmill R, Cooke L, Williams AC, Grant M (2011) Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research. Cancer Nurs 34(6):E13–E21. CrossRefPubMedPubMedCentralGoogle Scholar
  29. 29.
    Akgul N, Ozdemir L (2014) Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: a cross sectional study. Eur J Oncol Nurs 18(4):372–377. CrossRefPubMedGoogle Scholar
  30. 30.
    Applebaum AJ, Bevans M, Son T, Evans K, Hernandez M, Giralt S, DuHamel K (2016) A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions. Bone Marrow Transplant 51(11):1416–1422. CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Mangurian C, Packman W, Riano NS, Kearney J (2018) The need to support caregivers during pediatric bone marrow transplantation (BMT): a case report. Palliat Support Care 16(3):367–370. CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Sannes TS, Simoneau TL, Mikulich-Gilbertson SK, Natvig CL, Brewer BW, Kilbourn K, Laudenslager ML (2018) Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions. Support Care Cancer. CrossRefGoogle Scholar
  33. 33.
    Mayer DK, Tighiouart H, Terrin N, Stewart S, Peterson E, Jeruss S, Parsons SK (2009) A brief report of caregiver needs and resource utilization during pediatric hematopoietic stem cell transplantation. J Pediatr Oncol Nurs 26(4):223–229. CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Kaziunas E, Hanauer DA, Ackerman MS, Choi SW (2016) Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation. J Am Med Inform Assoc 23(1):94–104. CrossRefPubMedGoogle Scholar
  35. 35.
    Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60(5):317–339. CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Toseland RW, Blanchard CG, McCallion P (1995) A problem solving intervention for caregivers of cancer patients. Soc Sci Med 40(4):517–528. CrossRefPubMedGoogle Scholar
  37. 37.
    Dobrof J, Ebenstein H, Dodd S-J, Epstein I (2006) Caregivers and professionals partnership caregiver resource center: assessing a hospital support program for family caregivers. J Palliat Med 9(1):196–205. CrossRefPubMedGoogle Scholar
  38. 38.
    McDonald JC, Stetz KM, Compton K (1996) Educational interventions for family caregivers during marrow transplantation. Oncol Nurs Forum 23(9):1432–1439PubMedGoogle Scholar
  39. 39.
    Runaas L, Hanauer D, Maher M, Bischoff E, Fauer A, Hoang T, Munaco A, Sankaran R, Gupta R, Seyedsalehi S, Cohn A, An L, Tewari M, Choi SW (2017) BMT roadmap: a user-centered design health information technology tool to promote patient-centered care in pediatric hematopoietic cell transplantation. Biol Blood Marrow Transplant 23(5):813–819. CrossRefPubMedGoogle Scholar
  40. 40.
    Langer SL, Porter LS, Romano JM, Todd MW, Lee SJ (2018) A couple-based communication intervention for hematopoietic cell transplantation survivors and their caregiving partners: feasibility, acceptability, and change in process measures. Biol Blood Marrow Transplant 24(9):1888–1895. CrossRefPubMedGoogle Scholar
  41. 41.
    Preussler JM, Mau L-W, Majhail NS, Bevans M, Clancy E, Messner C, Parran L, Pederson KA, Ferguson SS, Walters K, Murphy EA, Denzen EM (2015) Patient housing barriers to hematopoietic cell transplantation: results from a mixed-methods study of transplant center social workers. Support Care Cancer 24:1167–1174. CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Creswell JW (2013) Research design: qualitative, quantitative, and mixed methods approaches, 4th edn. SAGE Publications, Inc., Thousand OaksGoogle Scholar
  43. 43.
    BMT Infonet |. Accessed August 15, 2018
  44. 44.
    Leukemia & Lymphoma Society (LLS). Peer-to-Peer Support. Published February 26, 2015. Accessed March 23, 2016
  45. 45.
    Home - National Bone Marrow Transplant Link. nbmtLINK. Accessed August 15, 2018
  46. 46.
    Be The Talk with a peer: Peer Connect Program. Published January 6, 2016. Accessed March 23, 2016
  47. 47.
    Rizzo JD, Vogelsang GB, Krumm S, Frink B, Mock V, Bass EB (1999) Outpatient-based bone marrow transplantation for hematologic malignancies: cost saving or cost shifting? J Clin Oncol 17(9):2811–2818CrossRefGoogle Scholar
  48. 48.
    Family and Medical Leave Act - Wage and Hour Division (WHD) - U.S. Department of Labor. Accessed November 8, 2016
  49. 49.
    State Family and Medical Leave Laws. National Conference of State Legislatures. Published July 19, 2016. Accessed October 14, 2016
  50. 50.
    Williams L (2007) Whatever it takes: informal caregiving dynamics in blood and marrow transplantation. Oncol Nurs Forum 34(2):379–387. CrossRefPubMedGoogle Scholar
  51. 51.
    Stetz KM, McDonald JC, Compton K (1996) Needs and experiences of family caregivers during marrow transplantation. Oncol Nurs Forum 23(9):1422–1427PubMedGoogle Scholar
  52. 52.
    Spruill A, Eron B (2011) Supporting bone marrow transplant caregivers: nursing’s influence on incorporating caregiver support services into the design of a new bone marrow transplant unit. Biol Blood Marrow Transplant 17(2, Supplement):S280CrossRefGoogle Scholar
  53. 53.
    Caregiver Strain and Burden | ONS. Accessed October 18, 2016
  54. 54.
    Kent EE, Rowland JH, Northouse LL, Litzelman K, Chou WYS, Shelburne N, Timura C, O’Mara A, Huss K (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer 122(13):1987–1995. CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply 2019

Authors and Affiliations

  • Jaime M. Preussler
    • 1
    • 2
    Email author
  • Lih-Wen Mau
    • 1
    • 2
  • Navneet S. Majhail
    • 3
  • Margaret Bevans
    • 4
  • Emilie Clancy
    • 1
  • Carolyn Messner
    • 5
  • Leslie Parran
    • 6
  • Kate A. Pederson
    • 1
  • Stacy Stickney Ferguson
    • 1
  • Kent Walters
    • 7
  • Elizabeth A. Murphy
    • 1
  • Ellen M. Denzen
    • 1
    • 2
  1. 1.National Marrow Donor Program®/Be The Match®MinneapolisUSA
  2. 2.Center for International Blood and Marrow Transplant ResearchMinneapolisUSA
  3. 3.Blood and Marrow Transplant ProgramCleveland ClinicClevelandUSA
  4. 4.National Institutes of Health Office of Research on Women’s HealthBethesdaUSA
  5. 5.CancerCareNew YorkUSA
  6. 6.University of Minnesota Medical CenterMinneapolisUSA
  7. 7.The University of Texas M.D. Anderson Cancer CenterHoustonUSA

Personalised recommendations