Skip to main content

Advertisement

Log in

An evidence-based stress management intervention for allogeneic hematopoietic stem cell transplant caregivers: development, feasibility and acceptability

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Caregivers of cancer patients face challenges impacting their physical, psychological and social well-being that need attention in the form of well-designed and tested interventions. We created an eight-session individual stress management intervention for caregivers of allogeneic hematopoietic stem cell transplant (Allo-HSCT) recipients. This intervention, tested by randomized control trial, proved effective in decreasing distress. Herein, we describe the intervention including theoretical framework, development, and elements of fidelity. Implementation challenges along with recommendations for refinement in future studies are discussed with the goal of replication and dissemination.

Methods

Seventy-four of 148 caregivers received stress management training following randomization. The intervention occurred during the 100-day post-transplant period when caregivers are required. The training provided integrated cognitive behavioral strategies, psychoeducation, and problem-solving skills building as well as use of a biofeedback device.

Results

Seventy percent of caregivers completed all eight sessions indicating good acceptability for the in-person intervention; however, most caregivers did not reliably use the biofeedback device. The most common reason for drop-out was their patient becoming gravely ill or patient death. Few caregivers dropped out because of study demands. The need for flexibility in providing intervention sessions was key to retention.

Conclusion

Our evidence-based stress management intervention for Allo-HSCT caregivers was feasible. Variability in acceptability and challenges in implementation are discussed and suggestions for refinement of the intervention are outlined. Dissemination efforts could improve by using alternative methods for providing caregiver support such as telephone or video chat to accommodate caregivers who are unable to attend in-person sessions.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. Northouse L (2005) Helping families of patients with cancer. Oncol Nurs Forum 32:743–750

    Article  PubMed  Google Scholar 

  2. Pinquart M, Sorensen S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 18:250–267

    Article  PubMed  Google Scholar 

  3. Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 19:1013–1025

    Article  PubMed  Google Scholar 

  4. Kent EE, Rowland JH, Northouse L et al (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer 122:1987–1995

    Article  PubMed  Google Scholar 

  5. Simoneau TL, Mikulich-Gilbertson SK, Natvig C et al (2013) Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psycho-Oncology 22:2064–2070

    Article  PubMed  PubMed Central  Google Scholar 

  6. Bevans MF, Ross A, Wehrlen L et al (2016) Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation. Stress 19:175–184

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Majhail NS, Farnia SH, Carpenter PA et al (2015) Indications for autologous and allogeneic hematopoietic cell transplantation: guidelines from the American Society for Blood and Marrow Transplantation. Biol Blood Marrow Transplant 21:1863–1869

    Article  PubMed  PubMed Central  Google Scholar 

  8. Hahn T, McCarthy PL Jr, Hassebroek A et al (2013) Significant improvement in survival after allogeneic hematopoietic cell transplantation during a period of significantly increased use, older recipient age, and use of unrelated donors. J Clin Oncol 31:2437–2449

    Article  PubMed  PubMed Central  Google Scholar 

  9. Blume KG, Amylon MD (2004) The evaluation and counseling of candidates for hematopoietic cell transplantation. In: Blume KG, Forman SJ, Appelbaum FR (eds) Thomas’ hematopoietic cell transplantation, 3rd edn. Blackwell Publishing, Massachusetts, pp 449–462

    Google Scholar 

  10. Wulff-Burchfield EM, Jagasia M, Savani BN (2013) Long-term follow-up of informal caregivers after allo-SCT: a systematic review. Bone Marrow Transplant 48:469–473

  11. Applebaum AJ, Breitbart W (2013) Care for the cancer caregiver: a systematic review. Palliat Support Care 11:231–252

    Article  PubMed  Google Scholar 

  12. O’Toole MS, Zachariae R, Renna ME et al (2016) Cognitive behavioral therapies for informal caregivers of patients with cancer and cancer survivors: a systematic review and meta-analysis. Psycho-Oncology. doi:10.1002/pon.4144

  13. Laudenslager ML, Simoneau TL, Kilbourn K et al (2015) A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: effects on distress. Bone Marrow Transplant 50:1110–1118

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Onken LS, Carroll KM, Shoham V et al (2014) Reenvisioning clinical science: unifying the discipline to improve the public health. Clin Psychol Sci 2:22–34

    Article  PubMed  PubMed Central  Google Scholar 

  15. Bellg AJ, Borrelli B, Resnick B et al (2004) Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH behavior change consortium. Health Psychol 23:443–451

    Article  PubMed  Google Scholar 

  16. Simoneau TL, Alpert J, Ash-Lee S (2007) A focus group to identify needs of caregivers for allogeneic transplant patients. Psycho-Oncology 16:S43

    Google Scholar 

  17. Adams E, Boulton M, Watson E (2009) The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ Couns 77:179–186

    Article  PubMed  Google Scholar 

  18. Kim Y, Carver CS (2012) Recognizing the value and needs of the caregiver in oncology. Curr Opin Support Palliat Care 6:4–9

    Article  Google Scholar 

  19. McDonald JC, Stetz KM, Compton K (1996) Educational interventions for family caregivers during marrow transplantation. Oncol Nurs Forum 23:1432–1439

    CAS  PubMed  Google Scholar 

  20. Stetz K, McDonald J, Compton K (1996) Needs and experiences of family caregivers during marrow transplantation. Oncol Nurs Forum 23:1422–1427

    CAS  PubMed  Google Scholar 

  21. Lazarus RS, Folkman S (1984) Stress, appraisal and coping. Springer Publishing Co, New York

    Google Scholar 

  22. Antoni MH, Lechner SC, Kazi A et al (2006) How stress management improves quality of life after treatment for breast cancer. J Consult Clin Psychol 74:1143–1152

    Article  PubMed  Google Scholar 

  23. McGregor BA, Antoni MH (2009) Psychological intervention and health outcomes among women treated for breast cancer: a review of stress pathways and biological mediators. Brain Behav Immun 23:159–166

    Article  CAS  PubMed  Google Scholar 

  24. McGregor BA, Antoni MH, Boyers AE et al (2004) Cognitive-behavioral stress management increases benefit finding and immune function among women with early stage breast cancer. J Psychosom Res 56:1–8

    Article  PubMed  Google Scholar 

  25. Antoni MH, Lehman JM, Kilbourn KM et al (2001) Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer. Health Psychol 20:20–32

    Article  CAS  PubMed  Google Scholar 

  26. Miklowitz DJ, Simoneau TL, George EL et al (2000) Family-focused treatment of bipolar disorder: 1-year effects of a psychoeducational program in conjunction with pharmacotherapy. Biol Psychiatry 48:582–592

    Article  CAS  PubMed  Google Scholar 

  27. Wilkins S, Castle S, Heck E, Tanzy K, Fahey J (1999) Immune function, mood, and perceived burden among caregivers participating in a psychoeducational intervention. Psychiatr Serv 50:747–749

    Article  CAS  PubMed  Google Scholar 

  28. Gavish B (2010) Device-guided breathing in the home setting: technology, performance and clinical outcomes. Biol Psychol 84:1500–1156

    Article  Google Scholar 

  29. Elliot WJ, Izzo JL Jr, White WB et al (2004) Graded blood pressure reduction in hypertensive outpatients associated with use of a device to assist with slow breathing. J Clin Hypertens 6:553–559

    Article  Google Scholar 

  30. Schulz R (2001) Some critical issues in caregiver intervention research. Aging Ment Health 5:S112–S115

    Article  PubMed  Google Scholar 

  31. Schulz R, Martire LM, Klinger JN (2005) Evidence-based caregiver interventions in geriatric psychiatry. Psychiatr Clin North Am 28:1007–1038

    Article  PubMed  Google Scholar 

  32. Burgio L, Lichstein KL, Nichols L et al (2001) Judging outcomes in psychosocial interventions for dementia caregivers: the problem of treatment implementation. Gerontologist 41:481–489

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  33. Sorensen S, Pinquart M, Duberstein P (2002) How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 42:356–372

    Article  PubMed  Google Scholar 

  34. Swift JK, Greenberg RP (2012) Premature discontinuation in adult psychotherapy: a meta-analysis. J Consult Clin Psychol 80:547–559

    Article  PubMed  Google Scholar 

  35. Ouseph R, Croy C, Natvig C, Simoneau T, Laudenslager ML (2014) Decreased mental health care utilization following a psychosocial intervention in caregivers of hematopoietic stem cell transplant patients. Ment Illn 6:5120

    PubMed  PubMed Central  Google Scholar 

  36. Badger TA, Segrin C, Hepworth JT et al (2012a) Telephone-delivered health education and interpersonal counseling improve quality of life for Latinas with breast cancer and their supportive partners. Psychooncology 22:1035–1042

    Article  PubMed  Google Scholar 

  37. Eakin EG, Lawler SP, Winkler EA, Hayes SC (2012) A randomized trial of a telephone-delivered exercise intervention for non-urban dwelling women newly diagnosed with breast cancer: exercise for health. Ann Behav Med 43:229–238

    Article  PubMed  Google Scholar 

  38. Kilbourn KM, Anderson D, Costenaro A et al (2012) Feasibility of EASE: a psychosocial program to improve symptom management in head and neck cancer patients. Support Care Cancer 21:191–200

    Article  PubMed  Google Scholar 

  39. Reese JB, Porter LS, Somers TJ, Keefe FJ (2012) Pilot feasibility study of a telephone-based couples intervention for physical intimacy and sexual concerns in colorectal cancer. J Sex Marital Ther 38:402–417

    Article  PubMed  PubMed Central  Google Scholar 

  40. Duffecy J, Sanford S, Wagner L et al (2012) Project onward: an innovative e-health intervention for cancer survivors. Psychooncology 22:947–951

    Article  PubMed  PubMed Central  Google Scholar 

  41. Ruland CM, Andersen T, Jeneson A et al (2012) Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial. Cancer Nurs 36:6–17

    Article  Google Scholar 

  42. Yun YH, Lee KS, Kim YW et al (2012) Web-based tailored education program for disease-free cancer survivors with cancer-related fatigue: a randomized controlled trial. J Clin Oncol 30:1296–1303

    Article  PubMed  Google Scholar 

  43. Miller G (2012) The smartphone psychology manifesto. Perspect Psychol Sci 7:221–237

    Article  PubMed  Google Scholar 

  44. Lapid MI, Atherton PJ, Clark MM et al (2015) Cancer caregiver: perceived benefits of technology. Telemedicine and e-Health 21:893–902

    Article  PubMed  PubMed Central  Google Scholar 

  45. Badger TA, Segrin C, Figueredo AJ et al (2012b) Who benefits from a psychosocial counseling versus educational intervention to improve psychological quality of life in prostate cancer survivors? Psychol Health 28:336–354

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

The authors are thankful to Susan Lutgendorf, Ph.D. for her important contributions in the early development of this study. The study is supported in part funds from the National Cancer Institute (CA126971) and the Patient Centered Outcomes Research Institute (CE-1304-6208).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Teresa L. Simoneau.

Ethics declarations

Disclaimers

Contents are the authors’ sole responsibility and do not necessarily represent official NIH or PCORI views.

Conflict of interest

The authors declare that they have 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

Simoneau, T.L., Kilbourn, K., Spradley, J. et al. An evidence-based stress management intervention for allogeneic hematopoietic stem cell transplant caregivers: development, feasibility and acceptability. Support Care Cancer 25, 2515–2523 (2017). https://doi.org/10.1007/s00520-017-3660-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-017-3660-5

Keywords

Navigation