Quality of life of living with a transplanted liver :The issue of returning to normalcy


  • Bethli Wainwright Auckland University of Technology
  • Marilyn J Waring Auckland University of Technology
  • Shirley Julich Massey University
  • Polly Yeung Massey University
  • Jenny K Green Massey University




Social Work and Health Care, Quality of Life, Chronic Illness, Liver Transplantation


INTRODUCTION: Advanced technology in medical and pharmacology has increased surgical survival rates for transplant recipients. Therefore, post-transplant care is critical and tightly connected with key focuses on the recipient’s quality of life (QOL). Post-transplant QOL is multifaceted,  encompassing morbidity and personal, social, familial and environmental support for recipients. Post-liver transplantation recovery extends well beyond returning home.

METHOD: Building on Wainwright’s research  (Wainwright, 2011a, 2011b; Wainwright, Jülich, Waring, Yeung, & Green, 2016), herself a liver transplant recipient, this article reports transplant recipients’ perceptions and experiences after the first three years and discusses how they re-established function in everyday life as they adapted to their new normal to achieve QOL. The research employed interpretive description to interview transcripts and field-notes of 17 liver transplant recipients. Data were evaluated according to inductive thematic analysis. Eschewing the health-related QOL measure for its rigidity and lack of qualitative data, this research captured the lived experiences of liver transplant recipients unlike clinically  focused studies.

FINDINGS: The results showed that, although transplantation can make positive changes in their lives, recipients continued to be influenced subtly by illness which can alter their re-conceptualisation and re-definition of QOL and normalcy. The success of a liver transplant does not depend only on the physical care given; to the recipients as the spectre of future ill health and transplant failure continue to be perceived as a constant risks. Ongoing support from family, friends, and healthcare professionals are none-the-less fundamental in the post-transplantation journey.

Author Biographies

Bethli Wainwright, Auckland University of Technology

School of Social Sciences & Public Policy

Marilyn J Waring, Auckland University of Technology

Professor of Public Policy, School of Social Sciences & Public Policy

Polly Yeung, Massey University

Senior Lecturer, School of Social Work

Jenny K Green, Massey University

Lecturer, School of Nursing


Åberg, F., Isoniemi, H., & Höckerstedt, K. (2011). Long-term results of liver transplantation. Scandinavian Journal of Surgery, 100(1), 14–21. doi:10.1177/145749691110000104

Akazawa, C., Nishizono, T., Yamamoto, M., Teraguchi, S., & Hayashi, Y. (2013). Investigation of actual daily lifestyle leading to continuous self-management after living-donor liver transplantation: More than 5 years living with living-donor liver transplantation and emotions of recipients. Japan Journal of Nursing Science, 10(1), 79–88. doi:10.1111/j.1742-7924.2012.00214.x

Blanch, J., Sureda, B., Flaviá, M., Marcos, V., de Pablo, J., De Lazzari, E., . . . Visa, J. (2004). Psychosocial adjustment to orthotopic liver transplantation in 266 recipients. Liver Transplantation, 10(2), 228–234. doi:10.1002/lt.20076

Boaz, A., & Morgan, M. (2014). Working to establish “normality” post-transplant: A qualitative study of kidney transplant patients. Chronic Illn, 10(4), 247–258. doi:10.1177/1742395313504789

Bright, M. J., Craven, J. L., & Kelly, P. J. (1990). Assessment and management of psychosocial stress in lung transplant candidates. Toronto Lung Transplant Group. Health Social Work, 15(2), 125–132.

Carosella, J. (1984). Picking up the pieces: The unsuccessful kidney transplant. Health & Social Work, 9(2), 142–152. doi:10.1093/hsw/9.2.142

Casey, R. P. (1996). Fighting for life: The story of a courageous pro-life democrat whose own brush with death made medical history. Dallas, TX: Word Publishing.

De Vito Dabbs, A., Hoffman, L. A., Iacono, A. T., Zullo, T. G., McCurry, K. R., & Dauber, J. H. (2004). Are symptom reports useful for differentiating between acute rejection and pulmonary infection after lung transplantation? Heart Lung, 33(6), 372–380.

Denzin, N. K. (1978). The research act: A theoretical introduction to sociological methods (2nd ed.). New York, NY: McGraw-Hill.

Desai, R., Jamieson, N. V., Gimson, A. E., Watson, C. J., Gibbs, P., Bradley, J. A., & Praseedom, R. K. (2008). Quality of life up to 30 years following liver transplantation. Liver Transplant, 14(10), 1473–1479. doi:10.1002/lt.21561

Dew, M. A., Goycoolea, J. M., Switzer, G. E., & Allen, A. S. (2000). Quality of life in organ transplantation: Effects on adult recipients and their families. In P. D. A. Trzepacz & A. DiMartini (Eds.), The transplant patient: Biological, psychiatric and ethical issues in organ transplantation (pp. 67–145). Cambridge, UK: Cambridge University Press.

Dew, M. A., Switzer, G. E., Goycoolea, J. M., Allen, A. S., DiMartini, A., Kormos, R. L., & Griffith, B. P. (1997). Does transplantation produce quality of life benefits? A quantitative analysis of the literature. Transplantation, 64(9), 1261–1273.

Dhooper, S. S., & Wilson, C. P. (1989). Social work and organ tTransplantation. Health & Social Work, 14(2), 115–121. doi:10.1093/hsw/14.2.115

Doering, L. V., Chen, B., Deng, M., Mancini, D., Kobashigawa, J., & Hickey, K. (2017). Perceived control and health-related quality of life in heart transplant recipients. European Journal of Cardiovascular Nursing.. doi:10.1177/1474515117749225

Dudley, T., Chaplin, D., Clifford, C., & Mutimer, D. J. (2007). Quality of life after liver transplantation for hepatitis C infection. Quality of Life Research, 16(8), 1299–1308. doi:10.1007/s11136-007-9244-y

Duffy, J. P., Kao, K., Ko, C. Y., Farmer, D. G., McDiarmid, S. V., Hong, J. C., . . . Busuttil, R. W. (2010). Long-term patient outcome and quality of life after liver transplantation: Analysis of 20-year survivors. Annals of Surgery, 252(4), 652–661. doi:10.1097/SLA.0b013e3181f5f23a

Fagerlind, H., Ring, L., Brulde, B., Feltelius, N., & Lindblad, A. K. (2010). Patients’ understanding of the concepts of health and quality of life. Patient Education and Counseling, 78(1), 104–110. doi:10.1016/j.pec.2009.05.016

Flynn, K., Daiches, A., Malpus, Z., Yonan, N., & Sanchez, M. (2013). “A post-transplant person”: Narratives of heart or lung transplantation and intensive care unit delirium. Health, 18(4), 352–368. doi:10.1177/1363459313501356

Forsberg, A., Bäckman, L., & Möller, A. (2000). Experiencing liver transplantation: A phenomenological approach. Journal of Advanced Nursing, 32(2), 327–334. doi:10.1046/j.1365-2648.2000.01480.x

Forsberg, A., Cavallini, J., Fridh, I., & Lennerling, A. (2016). The core of social function after solid organ transplantation. Scandinavian Journal of Caring Sciences, 30(3), 458–465. doi:10.1111/scs.12264

Gane, E., McCall, J., Streat, S., Gunn, K., Yeong, M. L., Fitt, S., . . . Munn, S. (2002). Liver transplantation in New Zealand: The first four years. New Zealand Medical Journal, 115(1159), 1–13.

Graarup, J., Mogensen, E. L., Missel, M., & Berg, S. K. (2017). Life after a lung transplant: A balance of joy and challenges. Journal of Clinical Nursing, 26(21–22), 3543–3552. doi:10.1111/jocn.13724

Grady, K. L., Wang, E., White-Williams, C., Naftel, D. C., Myers, S., Kirklin, J. K., . . . Heroux, A. (2013). Factors associated with stress and coping at 5 and 10 years after heart transplantation. Journal of Heart Lung Transplantation, 32(4), 437–446. doi:10.1016/j.healun.2012.12.012

Hagman, L., & Gold, T. (2001). Hello darlin’: Tall (and absolutely true) tales about my life. New York, NY: Simon & Schuster.

Hill, S., Harries, U., & Popay, J. (1993). The SF 36 health survey questionnaire. Unanswered questions remain. British Medical Journal (Clinical Research Ed.). doi:10.1136/bmj.307.6901.449-a

Hunt, M. R. (2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 1284–1292. doi:10.1177/1049732309344612

Ivarsson, B., Ekmehag, B., & Sjöberg, T. (2012). Patients’ experiences of information and support during the first six months after heart or lung transplantation. European Journal of Cardiovascular Nursing, 12(4), 400–406. doi:10.1177/1474515112466155

Ko, D., Lee, I., & Muehrer, R. J. (2016). Informational needs of liver transplant recipients during a two-year posttransplant period. Chronic Illness, 12(1), 29–40. doi:10.1177/1742395315601415

Littlefield, C., Abbey, S., Fiducia, D., Cardella, C., Greig, P., Levy, G., . . . Winton, T. (1996). Quality of life following transplantation of the heart, liver, and lungs. General Hospital Psychiatry, 18(Supplement 6), 36–47. doi:10.1016/S0163-8343(96)00082-5

Lumby, J. (1997). Liver transplantation: The death/life paradox. International Journal of Nursing Practice, 3(4), 231–238. doi:10.1111/j.1440-172X.1997.tb00107.x

Maier, F., & Maier, G. (1991). Sweet reprieve: One couple’s journey to the frontiers of medicine. New York, NY: Crown Publishers.

Mantulak, A., & Nicholas, D. B. (2016). “We're not going to say it's suffering; we’re going to say it's an experience”: The lived experience of maternal caregivers in pediatric kidney transplantation. Social Work Health Care, 55(8), 580–594. doi:10.1080/00981389.2016.1208712

Martin, S. C., Stone, A. M., Scott, A. M., & Brashers, D. E. (2009). Medical, personal, and social forms of uncertainty across the transplantation trajectory. Qualitative Health Research, 20(2), 182–196. doi:10.1177/1049732309356284

McKenna, K., Liddle, J., Brown, A., Lee, K., & Gustafsson, L. (2009). Comparison of time use, role participation and life satisfaction of older people after stroke with a sample without stroke. Australian Occupational Therapy Journal, 56(3), 177–188. doi:10.1111/j.1440-1630.2007.00728.x

Molassiotis, A., Van Den Akker, O. B. A., & Boughton, B. J. (1997). Perceived social support, family environment and psychosocial recovery in bone marrow transplant long-term survivors. Social Science & Medicine, 44(3), 317–325. doi:10.1016/S0277-9536(96)00101-3

Monroe, J., & Raiz, L. (2005). Barriers to employment following renal transplantation: Implications for the social work professional. Social Work Health Care, 40(4), 61–81. doi:10.1300/J010v40n04_04

Neukom, M., Corti, V., Boothe, B., Boehler, A., & Goetzmann, L. (2012). Fantasized recipient–donor relationships following lung transplantations: A qualitative case analysis based on patient narratives. The International Journal of Psychoanalysis, 93(1), 117–137. doi:10.1111/j.1745-8315.2011.00496.x

Oakley, F., Kielhofner, G., Barris, R., & Reichler, R. K. (1986). The role checklist: Development and empirical assessment of reliability. OTJR: Occupation, Participation and Health, 6(3), 157–170. doi:10.1177/153944928600600303

Paris, W., Calhoun-Wilson, G., Slentz, B., Dahr, A. S., Tebow, S., Hart, J., & Harrison, J. (1997). Employment and the transplant patient. Journal of Rehabilitation, 63(2), 10–14.

Robertson, G. (1999). Individuals’ perception of their quality of life following a liver transplant: An exploratory study. Journal of Advanced Nursing, 30(2), 497–505. doi:10.1046/j.1365-2648.1999.01105.x

Rosenberger, E. M., Dew, M. A., DiMartini, A. F., DeVito Dabbs, A. J., & Yusen, R. D. (2012). Psychosocial issues facing lung transplant candidates, recipients and family caregivers. Thoracic Surgery Clinics, 22(4), 517–529. doi:10.1016/j.thorsurg.2012.08.001

Ryu, J. H., Kim, M. H., & Kang, I. S. (2003). A study on the compliance and educational demand of renal transplantation patient. The Korean Journal of Rehabilitation Nursing, 6(2), 226–238.

Sanderson, T., Calnan, M., Morris, M., Richards, P., & Hewlett, S. (2011). Shifting normalities: Interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis. Sociology of Health & Illness, 33(4), 618–633. doi:10.1111/j.1467-9566.2010.01305.x

Sargent, S., & Wainwright, S. P. (2007). A qualitative study exploring patients received quality of life following an emergency liver transplant for acute liver failure. Intensive and Critical Care Nursing, 23(5), 272–280. doi:10.1016/j.iccn.2007.03.005

Schipper, K., Abma, T. A., Koops, C., Bakker, I., Sanderman, R., & Schroevers, M. J. (2014). Sweet and sour after renal transplantation: A qualitative study about the positive and negative consequences of renal transplantation. British Journal of Health Psychology, 19(3), 580–591. doi:10.1111/bjhp.12057

Scott, P. J. (2010). Participation in valued roles post-liver transplant. The British Journal of Occupational Therapy, 73(11), 517–523. doi:10.4276/030802210X12892992239198

Scott, P. J., & Brown, V. L. (2012). Resumption of valued activities in the first year post liver transplant. Occupational Therapy in Health Care, 26(1), 48–63. doi:10.3109/07380577.2011.643856

Seiler, A., Klaghofer, R., Ture, M., Komossa, K., Martin-Soelch, C., & Jenewein, J. (2016). A systematic review of health-related quality of life and psychological outcomes after lung transplantation. The Journal of Heart and Lung Transplantation, 35(2), 195–202. doi:10.1016/j.healun.2015.07.003

Siminoff, L. A., & Chillag, K. (1999). The fallacy of the “gift of life.” Hastings Center Report, 29(6), 34–41. doi:10.2307/3527870

Simmons, R. G., & Abress, L. (1990). Quality-of-life issues for end-stage renal disease patients. American Journal of Kidney Diseases, 15(3), 201–208. doi:10.1016/S0272-6386(12)80763-3

Thorne, S. (2008). Interpretive description. Walnut Creek, CA: Left Coast Press.

Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20(2), 169–177.

Thurmond, V. A. (2001). The point of triangulation. Journal of Nursing Scholarship, 33(3), 253–258. doi:10.1111/j.1547-5069.2001.00253.x

Tong, A., Chapman, J. R., Israni, A., Gordon, E. J., & Craig, J. C. (2013). Qualitative research in organ transplantation: Recent contributions to clinical care and policy. American Journal of Transplantation, 13(6), 1390–1399. doi:10.1111/ajt.12239

van der Mei, S. F., van Son, W. J., van Sonderen, E. L. P., de Jong, P. E., Groothoff, J., & van den Heuvel, W. J. A. (2007). Factors determining social participation in the first year after kidney transplantation: A prospective study. Transplantation, 84(6), 729–737. doi:10.1097/01.tp.0000281409.35702.53

Wainwright, B. (2011a). The lived experience of liver transplant recipients in New Zealand. (doctoral dissertation). Auckland University of Technology, Auckland, New Zealand. Retrieved from http://aut.researchgateway.ac.nz/handle/10292/2536

Wainwright, B. (2011b). Liver transplant recipients’ reflections on organ donors and organ donation: A preliminary analysis. Sites, 8(1), 83–107. doi:10.11157/sites-vol8iss1id146

Wainwright, B., Jülich, S., Waring, M., Yeung, P., & Green, J. K. (2016). Leaving the experts: Experiences of liver transplantation recipients in New Zealand. Nursing Praxis in New Zealand, 32(3), 7–19.

Walker, A., & Lowenstein, A. (2009). European perspectives on quality of life in old age. European Journal of Ageing, 6(2), 61–66. doi:10.1007/s10433-009-0117-9

Xu, J., Adeboyejo, O., Wagley, E., Aubrecht, J., Song, M. K., Thiry, L., & Dabbs, A. D. (2012). Daily burdens of recipients and family caregivers after lung transplant. Progress in Transplantation, 22(1), 41–47.

Zare, N. V., Mohammadi, E., Zarea, K., Ehahi, N., & Manzari, Z. (2015). The realities of living with a transplanted kidney: A qualitative study. Jundishapur Journal of Chronic Disease Care, 4(3), e28043. doi:10.5812/jjcdc.28043v2

Zilberfein, F., Hutson, C., Snyder, S., & Epstein, I. (2002). Social work practice with pre- and post-liver transplant patients. Social Work in Health Care, 33(3–4), 91–104. doi:10.1300/J010v33n03_07




How to Cite

Wainwright, B., Waring, M. J., Julich, S., Yeung, P., & Green, J. K. (2018). Quality of life of living with a transplanted liver :The issue of returning to normalcy. Aotearoa New Zealand Social Work, 30(1), 7–19. https://doi.org/10.11157/anzswj-vol30iss1id428



Original Articles