Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Review
  • Published:

A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions

Bone Marrow Transplantation volume 51, pages 1416–1422 (2016)Cite this article

Subjects

Abstract

The extant literature documents burden among caregivers of patients undergoing a hematopoietic stem cell transplantation (HSCT), but little is known about the burden of caregivers of patients receiving outpatient and homebound HSCTs. This scoping study sought to evaluate what is known about the burden of the increasing number of adult caregivers of patients receiving outpatient HSCTs and to create practice guidelines for how to best support this vulnerable group. Online databases were searched for studies that evaluated caregiver burden in adult caregivers of HSCT patients since 2010 (the publication date of the most recent systematic review on HSCT caregiver burden). Of the 1271 articles retrieved, 12 met the inclusion criteria, though none specifically examined outpatient or homebound caregivers. Overall, studies corroborated existing literature on the experience of significant burden among HSCT caregivers across the HSCT trajectory, and highlighted the emotional costs of outpatient transplants on caregivers and the need to identify caregivers at high risk for burden early in the transplant process. Future studies of outpatient caregivers should include a comprehensive assessment of burden and seek to identify points along the transplant trajectory at which caregivers are at particular risk for negative outcomes and when intervention is most appropriate.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Figure 1

Similar content being viewed by others

References

  1. Pasquini M, Wang Z, Horowitz MM, Gale RP . 2013 report from the Center for International Blood and Marrow Transplant Research (CIBMTR): current uses and outcomes of hematopoietic cell transplants for blood and bone marrow disorders. Clin Transpl 2013, 187–197.

  2. Svahn BM, Ringden O, Remberger M . Long-term follow-up of patients treated at home during the pancytopenic phase after allogeneic haematopoietic stem cell transplantation. Bone Marrow Transplant 2005; 36: 511–516.

    Article  CAS  Google Scholar 

  3. Pavletic ZS, Arrowsmith ER, Bierman PJ, Goodman SA, Vose JM, Tarantolo SR et al. Outcome of allogeneic stem cell transplantation for B cell chronic lymphocytic leukemia. Bone Marrow Transplant 2000; 25: 717–722.

    Article  CAS  Google Scholar 

  4. Solomon SR, Matthews RH, Barreras AM, Bashey A, Manion KL, McNatt K et al. Outpatient myeloablative allo-SCT: a comprehensive approach yields decreased hospital utilization and low TRM. Bone Marrow Transplant 2010; 45: 468–475.

    Article  CAS  Google Scholar 

  5. Svahn B, Bjurman B, Myrbäck K, Aschan J, Ringden O . Is it safe to treat allogeneic stem cell transplant recipients at home during the pancytopenic phase? A pilot trial. Bone Marrow Transplant 2000; 26: 1057–1060.

    Article  CAS  Google Scholar 

  6. Foster LW, McLellan L, Rybicki L, Dabney J, Copelan E, Bolwell B . Validating the positive impact of in-hospital lay care-partner support on patient survival in allogeneic BMT: a prospective study. Bone Marrow Transplant 2013; 48: 671–677.

    Article  CAS  Google Scholar 

  7. Grimm PM, Zawacki KL, Mock V, Krumm S, Frink BB . Caregiver responses and needs. Cancer Pract 2000; 8: 120–128.

    Article  CAS  Google Scholar 

  8. Simoneau TL, Mikulich‐Gilbertson SK, Natvig C, Kilbourn K, Spradley J, Grzywa‐Cobb R et al. Elevated peri‐transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psychooncology 2013; 22: 2064–2070.

    Article  Google Scholar 

  9. McDiarmid S, Hutton B, Atkins H, Bence-Bruckler I, Bredeson C, Sabri E et al. Performing allogeneic and autologous hematopoietic SCT in the outpatient setting: effects on infectious complications and early transplant outcomes. Bone marrow transplant 2010; 45: 1220–1226.

    Article  CAS  Google Scholar 

  10. Bevans MF, Spence Cagle C, Coleman M, Haisfield-Wolfe ME, Jadalla A, Page M et al. Caregiver Strain and Burden: Oncology Nursing Society. Available from https://www.ons.org/practice-resources/pep/caregiver-strain-and-burden.

  11. Vess JD Jr, Moreland JR, Schwebel AI . A follow-up study of role functioning and the psychological environment of families of cancer patients. J Psychooncology 1985; 3: 1–14.

    Google Scholar 

  12. Northouse LL . The impact of cancer on the family: An overview. Int J Psychiatry Med 1984; 14: 215–242.

    Article  Google Scholar 

  13. Siegel K, Raveis VH, Houts P, Mor V . Caregiver burden and unmet patient needs. Cancer 1991; 68: 1131–1140.

    Article  CAS  Google Scholar 

  14. Kissane DW, Bloch S, Burns WI, McKenzie D, Posterino M . Psychological morbidity in the families of patients with cancer. Psychooncology 1994; 3: 47–56.

    Article  Google Scholar 

  15. Boyle D, Blodgett L, Gnesdiloff S, White J, Bamford AM, Sheridan M et al. Caregiver quality of life after autologous bone marrow transplantation. Cancer Nurs 2000; 23: 193–203.

    Article  CAS  Google Scholar 

  16. Given BA, Given CW, Kozachik S . Family support in advanced cancer. CA Cancer J Clin 2001; 51: 213–231.

    Article  CAS  Google Scholar 

  17. Foxall MJ, Gaston-Johansson F . Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. J Adv Nurs 1996; 24: 915–923.

    Article  CAS  Google Scholar 

  18. Futterman AD, Wellisch DK, Zighelboim J, Luna-Raines M, Weiner H . Psychological and immunological reactions of family members to patients undergoing bone marrow transplantation. Psychosom Med 1996; 58: 472–480.

    Article  CAS  Google Scholar 

  19. Aslan O, Kav S, Meral C, Tekin F, Yesil H, Ozturk U et al. Needs of lay caregivers of bone marrow transplant patients in Turkey: a multicenter study. Cancer Nurs. 2006; 29: E1–E7.

    Article  CAS  Google Scholar 

  20. Gemmill R, Cooke L, Williams AC, Grant M . Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research. Cancer Nurs 2011; 34: E13.

    Article  Google Scholar 

  21. Beattie S, Lebel S . The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psychooncology 2011; 20: 1137–1150.

    Article  Google Scholar 

  22. Stiff P, Mumby P, Miler L, Rodriguez T, Parthswarthy M, Kiley K et al. Autologous hematopoietic stem cell transplants that utilize total body irradiation can safely be carried out entirely on an outpatient basis. Bone Marrow Transplant 2006; 38: 757–764.

    Article  CAS  Google Scholar 

  23. Summers N, Dawe U, Stewart DA . A comparison of inpatient and outpatient ASCT. Bone Marrow Transplant 2000; 26: 389–395.

    Article  CAS  Google Scholar 

  24. Bevans M, Sternberg EM . Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Jama 2012; 307: 398–403.

    Article  CAS  Google Scholar 

  25. Arksey H, O'Malley L . Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8: 19–32.

    Article  Google Scholar 

  26. Akgul N, Ozdemir L . Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: A cross sectional study. Eur J Oncol Nurs 2014; 18: 372–377.

    Article  Google Scholar 

  27. Laudenslager M, Simoneau T, Kilbourn K, Natvig C, Philips S, Spradley J et al. A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: effects on distress. Bone Marrow Transplant 2015; 50: 1110–1118.

    Article  CAS  Google Scholar 

  28. Sabo B, McLeod D, Couban S . The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora’s box. Cancer Nurs 2013; 36: 29–40.

    Article  Google Scholar 

  29. Cooke L, Grant M, Eldredge DH, Maziarz RT, Nail LM . Informal caregiving in Hematopoietic Blood and Marrow Transplant patients. Eur J Oncol Nurs. 2011; 15: 500–507.

    Article  Google Scholar 

  30. Bevans M, Wehrlen L, Castro K, Prince P, Shelburne N, Soeken K et al. A problem-solving education intervention in caregivers and patients during allogeneic hematopoietic stem cell transplantation. J Health Psychol 2014; 19: 602–617.

    Article  Google Scholar 

  31. El‐Jawahri AR, Traeger LN, Kuzmuk K, Eusebio JR, Vandusen HB, Shin JA et al. Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation. Cancer 2015; 121: 951–959.

    Article  Google Scholar 

  32. Jim H, Quinn G, Barata A, Cases M, Cessna J, Gonzalez B et al. Caregivers’ quality of life after blood and marrow transplantation: a qualitative study. Bone Marrow Transplant 2014; 49: 1234–1236.

    Article  CAS  Google Scholar 

  33. Armoogum J, Richardson A, Armes J . A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients. Support Care Cancer. 2013; 21: 977–986.

    Article  CAS  Google Scholar 

  34. Langer SL, Yi JC, Storer BE, Syrjala KL . Marital adjustment, satisfaction and dissolution among hematopoietic stem cell transplant patients and spouses: a prospective, five‐year longitudinal investigation. Psychooncology 2010; 19: 190–200.

    Article  Google Scholar 

  35. Bishop MM, Beaumont JL, Hahn EA, Cella D, Andrykowski MA, Brady MJ et al. Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. J Clin Oncol. 2007; 25: 1403–1411.

    Article  Google Scholar 

  36. Langer SL, Kelly TH, Storer BE, Hall SP, Lucas HG, Syrjala KL . Expressive talking among caregivers of hematopoietic stem cell transplant survivors: acceptability and concurrent subjective, objective, and physiologic indicators of emotion. J psychosoc Oncol 2012; 30: 294–315.

    Article  Google Scholar 

  37. Given B, Kozachik S, Collins C, DeVoss D, Given C Caregiver role strain. Nursing Care of Older Adult Diagnoses: Outcome and Interventions Mosby, St Louis, MO 2001, 679–680.

  38. Given CW, Given B, Stommel M, Collins C, King S, Franklin S . The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 1992; 15: 271–283.

    Article  CAS  Google Scholar 

  39. Stephan A, Mayer H, Guiteras AR, Meyer G . Validity, reliability, and feasibility of the German version of the Caregiver Reaction Assessment scale (G-CRA): a validation study. Int Psychogeriatr 2013; 25: 1621–1628.

    Article  Google Scholar 

  40. Misawa T, Miyashita M, Kawa M, Abe K, Abe M, Nakayama Y et al. Validity and reliability of the Japanese version of the Caregiver Reaction Assessment Scale (CRA-J) for community-dwelling cancer patients. Am J Hosp Palliat Care 2009; 26: 334–340.

    Article  Google Scholar 

  41. Yoon SJ, Kim JS, Jung JG, Kim SS, Kim S . Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients. Support Care Cancer 2014; 22: 1243–1250.

    Article  Google Scholar 

  42. Sautter JM, Tulsky JA, Johnson KS, Olsen MK, Burton‐Chase AM, Hoff Lindquist J et al. Caregiver experience during advanced chronic illness and last year of life. J Am Geriatr Soc 2014; 62: 1082–1090.

    Article  Google Scholar 

  43. National Alliance for Caregiving (2016). Caregiver Health. http://www.caregiving.org/resources/caregiver-health/.

  44. Network NCC. Distress management. Clinical practice guidelines. JNatl Compr Cancer Netw 2003; 1: 344.

    Article  Google Scholar 

  45. Bevans M, Wehrlen L, Prachenko O, Soeken K, Zabora J, Wallen GR . Distress screening in allogeneic hematopoietic stem cell (HSCT) caregivers and patients. Psychooncology 2011; 20: 615–622.

    Article  Google Scholar 

  46. Zabora J, Buzaglo J, Kennedy V, Richards T, Schapmire T, Zebrack B et al. Clinical perspective: Linking psychosocial care to the disease continuum in patients with multiple myeloma. Palliat Support Care 2015; 13: 829–838.

    Article  Google Scholar 

  47. Young L . The family experience following bone marrow or blood cell transplantation. J Adv Nurs 2013; 69: 2274–2284.

    Article  Google Scholar 

  48. Wulff-Burchfield EM, Jagasia M, Savani BN . Comparison of lasting life changes after cancer and BMT: perspectives of long-term survivors and spouses. Psychooncology 2011; 20: 926–934.

    Google Scholar 

  49. Bishop MM, Curbow BA, Springer SH, Lee JA, Wingard JR . Long-term follow-up of informal caregivers after allo-SCT: a systematic review. Bone Marrow Transplant 2013; 48: 469–473.

    Article  Google Scholar 

Download references

Acknowledgements

We would like to thank Jaclyn M Musum, BS, for her assistance with the preparation of this manuscript.

Author information

Authors and Affiliations

  1. Memorial Sloan Kettering Cancer Center, New York, NY, USA

    A J Applebaum, T Son, K Evans, M Hernandez, S Giralt & K DuHamel

  2. National Institutes of Health Clinical Center, Bethesda, MD, USA

    M Bevans

Authors
  1. A J Applebaum
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. M Bevans
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. T Son
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. K Evans
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. M Hernandez
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. S Giralt
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. K DuHamel
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to A J Applebaum.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Applebaum, A., Bevans, M., Son, T. et al. A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions. Bone Marrow Transplant 51, 1416–1422 (2016). https://doi.org/10.1038/bmt.2016.164

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/bmt.2016.164

This article is cited by

Search

Advanced search

Quick links