Abstract
Purpose
To explore the experiences of haematopoietic stem cell transplant survivors attending the long-term follow-up unit.
Methods
A descriptive qualitative study of eight post-haematopoietic stem cell transplant survivors which were interviewed guided by the sense of coherence framework. Thematic analysis was used to extract meaningful explication of the survivors’ experiences.
Results
The post-haematopoietic stem cell transplant survivors interviewed were five females and three males with age ranging from 27 to 67 years and had the stem cell transplant between 4 and 20 years. Three main themes emerged from the data including (1) comprehending the experience, (2) acknowledging the meaningfulness of the experience and (3) managing threats to a new life after the transplant. The experiences of post-haematopoietic stem cell transplant survivors were initially difficult but they were able to make re-adjustments to their new life by reconciling with their new identity, refocusing on meaningful activities, strengthening their resilience and navigating the healthcare system.
Conclusion
In spite of the difficulties faced by the survivors, they were able to face the challenges and made adjustment in a positive light by focusing on the valuable aspects of their experiences. Health care practitioners need to continually support them throughout their survivorship journey no matter how long it takes. Any long-term follow-up unit is a step in the right direction to meet the complex needs of the survivors by integrating and adapting clinical guidelines into routine oncologic and transplant care so that survivors are not lost in transition following treatment.
Similar content being viewed by others
References
Hatzimichael E, Tuthill M (2010) Hematopoietic stem cell transplantation. Stem Cells Cloning 3:105–117. https://doi.org/10.2147/sccaa.s6815
Champlin R (2003) Holland-Frei cancer medicine, 6th edition. In: Selection of autologous or allogeneic transplantation. BC Decker, Hamilton, ON
World Health Organisation (WHO). (2018) Haematopoietic stem cell transplantation HSCtx. Retrieved November 19, 2018, from http://www.who.int/transplantation/hsctx/en/
Gratwohl A, Pasquini MC, Aljurf M, Atsuta Y, Baldomero H, Foeken L et al (2015) One million haemopoietic stem-cell transplants: a retrospective observational study. Lancet Haematol 2(3):e91–e100. https://doi.org/10.1016/s2352-3026(15)00028-9
Majhail NS, Farnia SH, Carpenter PA, Champlin RE, Crawford S, Marks DI 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(11), 1863–1869. https://doi.org/10.1016/j.bbmt.2015.07.032
Sureda A, Bader P, Cesaro S, Dreger P, Duarte RF, Dufour C, Falkenburg JH, Farge-Bancel D, Gennery A, Kröger N, Lanza F, Marsh JC, Nagler A, Peters C, Velardi A, Mohty M, Madrigal A (2015) Indications for allo- and auto-SCT for haematological diseases, solid tumours and immune disorders: current practice in Europe, 2015. Bone Marrow Transplant 50(8):1037–1056. https://doi.org/10.1038/bmt.2015.6
Okamoto S (2017) Current indication for hematopoietic cell transplantation in adults. Hematol Oncol Stem Cell Ther 10(4):178–183. https://doi.org/10.1016/j.hemonc.2017.05.007
Norkin M, Wingard JR (2017) Recent advances in hematopoietic stem cell transplantation. F1000Res 6:870. https://doi.org/10.12688/f1000research.11233.1.eCollection2017.Review
Lee SJ, Klein J, Haagenson M, Baxter-Lowe LA, Confer DL, Eapen M, Fernandez-Vina M, Flomenberg N, Horowitz M, Hurley CK, Noreen H, Oudshoorn M, Petersdorf E, Setterholm M, Spellman S, Weisdorf D, Williams TM, Anasetti C (2007) High-resolution donor-recipient HLA matching contributes to the success of unrelated donor marrow transplantation. Blood. 110(13):4576–4583. https://doi.org/10.1182/blood-2007-06-097386
Reisner Y, Aversa F, Martelli MF (2015) Haploidentical hematopoietic stem cell transplantation: state of art. Bone Marrow Transplant 50(Suppl 2):S1–S5. https://doi.org/10.1038/bmt.2015.86
Hwang WYK, Poon Z, Bari S (2014) Improving the efficacy and availability of stem sell transplant therapies for hematopoietic stem cell transplantation. J Stem Cell Res Ther 4(6). https://doi.org/10.4172/2157-7633.1000214
Phipps C, Ho AY, Linn YC, Gopalakrishnan S, Ang AL, Lee JJ, Hwang WY (2016) Thirty years of bone marrow transplantation in the Singapore General Hospital. Ann Acad Med Singap 45(7):315–317
Hwang J (2017) [Powerpoint] CT- the Singapore experience Retrieved March 8, 2019 from https://www.slideshare.net/SingaporeAPBMT2016/hsct-the-singapore-sgp-experience-jordan-hwang
Hashmi SK, Bredeson C, Duarte RF, Farnia S, Ferrey S, Fitzhugh C, Flowers MED, Gajewski J, Gastineau D, Greenwald M, Jagasia M, Martin P, Rizzo JD, Schmit-Pokorny K, Majhail NS (2017) National Institutes of Health blood and marrow transplant late effects initiative: the Healthcare Delivery Working Group report. Biol Blood Marrow Transplant 23(5):717–725. https://doi.org/10.1016/j.bbmt.2016.09.025
Henig I, Zuckerman T (2014) Hematopoietic stem cell transplantation—50 years of evolution and future perspectives. Rambam Maimonides Med. J 5(4)
Majhail NS (2017) Long-term complications after hematopoietic cell transplantation. Hematol Oncol Stem Cell Ther 10(4):220–227
Bevans M, El-Jawahri A, Tierney DK, Wiener L, Wood WA, Hoodin F et al (2017) National Institutes of Health hematopoietic cell transplantation late effects initiative: the Patient-Centered Outcomes Working Group report. Biol Blood Marrow Transplant 23(4):538–551
Bhatia S, Francisco L, Carter A, Sun CL, Baker KS, Gurney JG et al (2007) Late mortality after allogeneic hematopoietic cell transplantation and functional status of long-term survivors: report from the Bone Marrow Transplant Survivor Study. Blood 110(10):3784–3792. https://doi.org/10.1182/blood-2007-03-082933
Clavert, A., Peric, Z., Brissot, E., Malard, F., Guillaume, T., Delaunay, J., . . .Chevallier, P. (2017). Late complications and quality of life after reduced-intensity conditioning allogeneic stem cell transplantation. Biol Blood and Marrow Transplantation, 23(1), 140–146. doi:https://doi.org/10.1016/j.bbmt.2016.10.011
Berbis J, Michel G, Chastagner P, Sirvent N, Demeocq F, Plantaz D et al (2013) A French cohort of childhood leukemia survivors: impact of hematopoietic stem cell transplantation on health status and quality of life. Biol Blood and Marrow Transplantation 19(7):1065–1072
Khera N, Chang Y-h, Hashmi S, Slack J, Beebe T, Roy V et al (2014) Financial burden in recipients of allogeneic hematopoietic cell transplantation. Biol Blood Marrow Transplant 20(9):1375–1381
Armenian SH, Sun CL, Teh JB, Arora M, Baker KS, Francisco L, Forman SJ, Bhatia S (2010) Ethnic differences in chronic health conditions after hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study. Cancer 116(17):4152–4159
Stepanikova I, Powroznik K, Cook KS, Tierney DK, Laport GG (2016) Exploring long-term cancer survivors’ experiences in the career and financial domains: interviews with hematopoietic stem cell transplantation recipients. J Psychosol Oncol 34(1–2):2–27
Andrykowski MA, Bishop MM, Hahn EA, Cella DF, Beaumont JL, Brady MJ et al (2005) Long-term health-related quality of life, growth, and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol 23(3):599–608. https://doi.org/10.1200/jco.2005.03.189
Rusiewicz A, DuHamel KN, Burkhalter J, Ostroff J, Winkel G, Scigliano E, Redd W (2008) Psychological distress in long-term survivors of hematopoietic stem cell transplantation. Psycho-Oncol 17(4):329–337. https://doi.org/10.1002/pon.1221
Esser P, Kuba K, Scherwath A, Schirmer L, Schulz-Kindermann F, Dinkel A, Balck F, Koch U, Kröger N, Götze H, Mehnert A (2017) Posttraumatic stress disorder symptomatology in the course of allogeneic HSCT: a prospective study. J Can Survivorship 11(2):203–210. https://doi.org/10.1007/s11764-016-0579-7
Rosenberg AR, Syrjala KL, Martin PJ, Flowers ME, Carpenter PA, Salit RB, Baker KS, Lee SJ (2015) Resilience, health, and quality of life among long-term survivors of hematopoietic cell transplantation. Cancer 121(23):4250–4257
Beeken RJ, Eiser C, Dalley C (2011) Health-related quality of life in haematopoietic stem cell transplant survivors: a qualitative study on the role of psychosocial variables and response shifts. Qual Life Res 20(2):153–160
Alaloul F, Brockopp DY, Andrykowski MA, Hall LA, Al Nusairat TS (2015) Quality of life in Arab Muslim cancer survivors following hematopoietic stem cell transplantation: comparison with matched healthy group. Support Care Cancer 23(7):2157–2164
Bieri S, Roosnek E, Helg C, Verholen F, Robert D, Chapuis B, Passweg J, Miralbell R, Chalandon Y (2008) Quality of life and social integration after allogeneic hematopoietic SCT. Bone Marrow Transplant 42(12):819–827
Higginson IJ, Carr AJ (2001) Using quality of life measures in the clinical setting. Bmj 322(7297):1297–1300
Forman SJ, Nakamura R (2015) Hematopoietic cell transplantation. Retrieved February 3, 2019 from http://www.cancernetwork.com/cancermanagement/hematopoietic-cell-transplantation
Battiwalla M, Tichelli A, Majhail NS (2017) Reprint of: long-term survivorship after hematopoietic cell transplantation: roadmap for research and care. Biol Blood Marrow Transplant 23(3s):S1–s9. https://doi.org/10.1016/j.bbmt.2017.01.001
Hammarberg K, Kirkman M, De Lacey S (2016) Qualitative research methods: when to use them and how to judge them. Hum Reprod 31(3):498–501
Kerr C, Nixon A, Wild D (2010) Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res 10(3):269–281
Antonovsky H, Sagy S (1986) The development of a sense of coherence and its impact on responses to stress situations. J Soc Psychol 126(2):213–225
Eriksson M (2017) The sense of coherence in the salutogenic model of health. In: The handbook of salutogenesis. Springer. International Publishing, Cham (CH), pp 91–96
Lindblad C, Langius-EklÖff A, Petersson L-M, Sackey H, Bottai M, Sandelin K (2018) Sense of coherence is a predictor of survival: a retrospective study in women treated for breast cancer. Psycho-Oncol. 27:1615–1621. https://doi.org/10.1002/pon.4702
Malterud K, Siersma VD, Guassora AD (2016) Sample size in qualitative interview studies: guided by information power. Qual Health Res 26(13):1753–1760
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa
Thomas E, Magilvy JK (2011) Qualitative rigor or research validity in qualitative research. J Spec Pediatr Nurs 16(2):151–155
Little M, Paul K, Jordens CF, Sayers EJ (2002) Survivorship and discourses of identity. Psycho-Oncol 11(2):170–178. https://doi.org/10.1002/pon.549
Greenblatt A, Lee E (2018) Cancer survivorship and identity: what about the role of oncology social workers? Soc Work Health Care 57(10):811–833
Brice, L., Gilroy, N., Dyer, G., Kabir, M., Greenwood, M., Larsen, S., . . .Kerridge, I. (2017). Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all? Support. Care Cancer, 25(2), 421–427. doi:https://doi.org/10.1007/s00520-016-3418-5
Hara R, Blum D (2009) Social well-being and cancer survivorship. Oncology 23(2):40–50
Mak AKY, Ho SS, Kim HJ (2014) Factors related to employers’ intent to hire, retain and accommodate cancer survivors: the Singapore perspective. J Occupational Rehab 24(4):725–731
Sapp AL, Trentham-Dietz A, Newcomb PA, Hampton JM, Moinpour CM, Remington PL (2003) Social networks and quality of life among female long-term colorectal cancer survivors. Cancer 98(8):1749–1758
Dyer G, Larsen SR, Gilroy N, Brice L, Greenwood M, Hertzberg M et al (2016) Adherence to cancer screening guidelines in Australian survivors of allogeneic blood and marrow transplantation (BMT). Cancer Med 5(7):1702–1716
Gibson AF, Lee C, Crabb S (2015) ‘Take ownership of your condition’: Australian women’s health and risk talk in relation to their experiences of breast cancer. Health Risk Soc 17(2):132–148
Lustig DC, Rosenthal DA, Strauser DR, Haynes K (2000) The relationship between sense of coherence and adjustment in persons with disabilities. Rehabil Couns Bull 43(3):134–141
Loh KWJ, Ng T, Choo SP, Saw HM, Mahendran R, Tan C et al (2018) Cancer supportive and survivorship care in Singapore: current challenges and future outlook. J Global Oncol 4(1):1–8
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Ethical approval involving humans
All procedures conformed with the ethical approval by the institution ethics committee and with the Helsinki declaration. Patients were informed of their rights to withdraw from the study without this affecting their attendance at the HSCT long-term follow-up unit.
Patient consent statement
Signed consent was obtained from all participants in this study. All data collected were de-identified to protect their privacy and maintain confidentiality.
Conflict of interest
The authors declare that they have no conflict of interest.
Additional information
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Sharin, U.B.M., Hwang, C.C.J., Ang, W.H.D. et al. The haematopoietic stem cell transplant survivors’ sense of coherence about their experiences: a qualitative study. Support Care Cancer 28, 4275–4283 (2020). https://doi.org/10.1007/s00520-019-05273-3
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-019-05273-3