Research Article
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Expectations of liver transplantation candidates’ and their relatives and difficulties they experience

Year 2019, Volume: 44 Issue: 2, 669 - 684, 30.06.2019
https://doi.org/10.17826/cumj.440855

Abstract

Purpose:The study was carried out to investigate the expectations of liver
transplantation candidates and their relatives concerning transplantation and
the difficulties they experience.

Materials and Methods:This descriptive
and single-center study was performed in the Transplantation Polyclinic of a
public hospital in Ankara. The sample consisted of 170 liver transplantation
candidates and 170 patient relatives. Data were collected through face-to-face
interviews with participants. Percentage, average, chi-square, and Fisher’s
exact chi-square tests were used to evaluate the data.

Results:This study reveals that the most important expectation of liver
transplantation candidates during the waiting period is “a transplant operation
with successful results” (70.0%), whereas liver transplantation patients’
relatives are primarily concerned with the expectation that their sick relative
will “regain her or his health”(80.0%).Almost all (97.1%) of the patients had
physical problems,and the majority of them(87.1%) struggled with activities of
daily living and experienced psychological (85.3%) and socio-economic problems (81.8%).Patients’
relatives also had problems associated with activities of daily living (80.6%)
and experienced psychological (81.8%) and socio-economic (
73.5%) difficulties.







Conclusion:The results of this study confirm that liver
transplantation candidates and their relatives experience many difficulties
that impact their activities of daily living, as well as psychological and
socio-economic problems.In order to provide relief from these difficulties, liver
transplantation candidates and their relatives should be given training and
counseling.

References

  • REFERENCES1. Murray KF, Carithers RL. AASLD practice guidelines: evaluation of the patient for liver transplantation. Hepatology. 2005;41:1407-1432.2. Doğruer K, Ocak İ, Koçak B, Kanmaz T, Acarlı K, Kalayoğlu M.Intensive care management for liver transplantation. Turk J Int Care Med. 2007;7:417-425.3. Yoo MC, West JM, Eason JD, Vanatta JM. The advantages and disadvantages of perioperative transesophageal echocardiography during liver transplantation. J Anesthe Clinic Res. 2012;4:1-3.4. Karademir S. Liver transplantation. Türkiye Klinikleri J Surg Med Sci. 2006;2:40-48.5. The Republic of Turkey Ministry of Health, 2013 Organ Transplant and Dialysis Services Department Current Waiting List. https://organ.saglik.gov.tr (accessed June 2013).6. Aras G. Problems and needs ofliver transplant patients and their families and the level of their contribution to patient care. (Unpublished Master's Thesis). Istanbul, Marmara University, 2006.7. Dalgıç A, Altuntaş B, Özenirler S, Tatlıcıoğlu E.The analises of the patients on waiting list for liver transplantation in Gazı University Medical School. Türkiye Klinikleri J Gastroenterohepatol. 2001;12:164-169.8. Kim WR, Biggins GB, Kremers WK, Wiesner RH, Kamath PS, Benson JT et al. Hyponatremia and mortality among patients on the liver-transplant waiting list. N Engl J Med. 2008;359:1018-1026.9. Wiesinger GF, Quittan M, Zimmermann K, Nuhr M, Wichlas M, Bodingbauer M, et al. Physical performance and health-related quality of life in men on a liver transplantation waiting list. J Rehabil Med. 2001;33:260-265.10. Gündoğdu-Yurdakan S. Evaluation of the quality of life chronic and transplanted liver patients. (Unpublished Master's Thesis). Afyon, Afyon Kocatepe University, 2007.11. Taşdelen P, Ateş M. The needs of home care patients and the burdens of their caregivers. J Ed Res Nurs. 2012;9:22-29.12. Yun YH, Rhee YS, Kang IO, Lee JS, Bang SM, Lee WS. Economic burdens and quality of life of family caregivers of cancer patients. Oncology. 2005;68:107-114.13. Goetzmann L, Wagner-Huber R, Klaghofer R, Muellhaupt B, Clavien PA, Buddeberg C et al. Waiting for a liver transplant: psychosocial well-being, spirituality, and need for counselling. Transplant Proc. 2006;38:2931-2936.14. Guimaro MS, Lacerda SS, Karam CH, Ferraz-Neto BH, Andreoli PB. Psychosocial profile of patients on the liver transplant list. Transplant Proc. 2008;40:782-784.15. Büyükkaya D, Fesci H, Akdemir N. Determine of self-care agency of patients with liver cirrhosis. J Anatolia Nurs Health Sci. 2006;9:14-24.16. Özdemir Ü, Taşcı S. Psychosocial problems and care of chronic diseases. Erciyes University Journal of Health Sciences. 2013;1:57-72.17. Li PK, Chu KH, Chow KM, Lau MF, Leung CB, Kwan BC et al.Cross sectional survey on the concerns and anxiety of patients waiting for organ transplants. Nephrology (Carlton). 2012;17:514-518.18. Schirm V. Quality of life. In Chronic Illness:Impact And Interventions (Eds IM Lubkin, PD Larsen=: 183-209. London:Jones & Bartlett Learning Publishing;2006. 19. Miyazaki ET, Dos Santos R Jr, Miyazaki MC, Domingos NM, Felicio HC, Rocha MF et al. Patients on the waiting list for liver transplantation: caregiver burden and stress. Liver Transpl. 2010;16:1164-1168.20. Littlejohn W, Routledge J. Liver transplatation. In Liver Disease:An Essential Guide for Nurses and Health Care Professionals (Ed Sargent S): 306-323. Hong Kong: Blackwell Publishing, 2009. 21. Fioravanti VL. Liver transplantation. In Organ Transplantation: A Manual For Nurses (Eds BAH Wailliams, KL Grady=: 186-203. New York: Springer Publising, 1991. 22. Bayramova N, Karadakovan A. Determine hopelessness of patients who has a chronic illness. Ataturk University School of Nursing Journal. 2004;7:39-47.23. Telles-Correia D, Barbosa A, Mega I, Monteiro E. Importance of depression and active coping in liver transplant candidates' quality of life. Prog Transplant. 2009;19:85-89.24. Organ Procurement and Transplantation Network (OPTN). National Data, Organ by waiting time. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#. (accessed August 2016).25. Holzner B, Kemmler G, Kopp M, Dachs E, Kaserbacher R, Spechtenhauser B et al. Preoperative expectations and postoperative quality of life in liver transplant survivors. Arch Phys Med Rehabil. 2001;82:73-79.26. Meltzer LJ, Rodrigue JR. Psychological distress in caregivers of liver and lung transplant candidates. J Clin Psychol Med Settings. 2001;8:173-180.27. Claar RL, Parekh PI, Palmer SM, Lacaille RA, Davis RD, Rowe SK et al. Emotional distress and quality of life in caregivers of patients awaiting lung transplant. J Psychosom Res. 2005;59:1-6.28. Younossi Z, Guyatt G, Kiwi M, Boparai N, King D. Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut. 1999;45:295-300.29. Khan FY. Ascites in the State of Qatar: aetiology and diagnostic value of ascitic fluid analysis. Singapore Med J. 2007;48:434-439.30. Can C. The prevalance of psychiatric symptoms and disorders, the quality of life, general cognitive and sexual functions before and one year after liver transplantation (Unpublished Medical Thesis). Izmir, Dokuz Eylul University Faculty of Medicine, 2010.31. Rakoski MO, McCammon RJ, Piette JD, Iwashyna TJ, Marrero JA, Lok AS. Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study. Hepatology. 2012;55:184-191.32. Bernardi M, Ricci CS, Zaccherini G. Role of human albumin in the management of complications of liver cirrhosis. Journal of Clinical and Experimental Hepatology. 2014;4:302-11.33. Ceylan E, Gencer M, Bölükbaşı F. Hepatopulmonary syndrome. Turkiye Klinikleri Arch Lung. 2006;7:40-44.34. Yalçın K. Karaciğer hastalıklarında semptomlar. In Karaciğer Hastalıklarına Klinik Yaklaşım (Eds H Değertekin, K Yalçın=: 29-35. İstanbul, Pars Yayıncılık. 2009. 35. Lasker JN, Sogolow ED, Olenik JM, Sass DA, Weinrieb RM. Uncertainty and liver transplantation: women with primary biliary cirrhosis before and after transplant. Women Health. 2010;50:359-375.36. Maikranz JM, Steele RG, Dreyer ML, Stratman AC, Bovaird JA. The relationship of hope and illness-related uncertainty to emotional adjustment and adherence among pediatric renal and liver transplant recipients. J Pediatr Psychol. 2007;32:571-581.37. Vermeulen KM, Bosma OH, Bij WV, Koëter GH, Tenvergert EM. Stress, psychological distress,and coping in patients on the waiting list for lung transplantation: an exploratory study.Transpl Int. 2005;18:954-959.38. Gündoğan F. Evaluation of self image and self esteem in cirrhosis patients (Unpublished Master's Thesis). Bolu, Abant İzzet Baysal University,2006.39. Rishe E, Azarm A, Bergasa NV. Itch in primary biliary cirrhosis:a patients' perspective. Acta Derm Venereol. 2008;88:34-37.40. Susuzlu M. Assessment of malnutrition, body composition and energy and nutrient intakes in patients with liver cirrhosis (Unpublished Master's Thesis). Ankara, Hacettepe University,2013.41. Caballero JM, Rodríguez AN, Peña PG, Muñoz SC, Beardo ME. Information and knowledge of the main caregiver of the cirrhotic patient. Nure Invest. 2005;13:1-6.42. Son J, Erno A, Shea DG, Femia EE, Zarit SH, Stephens MA. The caregiver stress process and health outcomes. J Aging Health. 2007;19:871-887.43. Saunders MM. Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res. 2008;30:943-959.44. Rodrigue JR, Baz MA. Waiting for lung transplantation: quality of life, mood, caregiving strain and benefit, and social intimacy of spouses. Clin Transplant. 2007;21:722-727.45. Atagun MI, Balaban OD, Atagun Z, Elagoz M, Yılmaz-Ozpolat A. Caregiver burden in chronic diseases. Current Approaches in Psychiatry. 2011;3:513-552.46. Kara T. The difficulties the caregivers attending to patient with obsessive compulsive disorder (OCD) confronted and determination of social support and the states of coping (Unpublished Master's Thesis). Kayseri, Erciyes University, 2007.47. Domínguez-Cabello E, Pérez-San-Gregorio MA, Martín-Rodríguez A, Pérez-Bernal J. Comparison of anxious and depressive symptomatology among pretransplant hepatic patients and their relatives. Transplant Proc. 2010;42:2962-2963.48. Hacımusalar-Demir G. The identification of the problems of caregivers responsible for the nursing of hemodialysis patients (Unpublished Master's Thesis). Kayseri, Erciyes University, 2005.49. Mollaoğlu M, Özkan-Tuncay F, Kars-Fertelli T. Care burden of care givers of stroke patients and related factors. Dokuz Eylul University School of Nursing Electronic Journal. 2011;4:125-130.

Karaciğer transplantasyonu adaylarının ve yakınlarının beklentileri ve yaşadıkları güçlükler

Year 2019, Volume: 44 Issue: 2, 669 - 684, 30.06.2019
https://doi.org/10.17826/cumj.440855

Abstract

Amaç: Bu araştırma, karaciğer transplantasyonu için bekleyen hastaların ve yakınlarının
beklentilerini ve yaşadıkları güçlükleri belirlemek amacıyla yapılmıştır.

Gereç ve Yöntem: Tanımlayıcı ve tek merkezli bu çalışma, Ankara'daki bir kamu
hastanesinin Transplantasyon Polikliniğinde yapılmıştır. Örnekleme 170
karaciğer transplantasyonu adayı ve 170 hasta yakınını dahil edilmiştir. Veriler
katılımcılar ile yüzyüze görüşülerek toplanmıştır. Verilerin değerlendirilmesi
için yüzde, ortalama, ki-kare ve Fisher'in kesin ki-kare testleri
kullanılmıştır.

Bulgular: Araştırmada, karaciğer transplantasyonu bekleyen hastaların bekleme
süreci sırasında en büyük beklentisinin “başarılı bir nakil ameliyatı olma”
(%70.0), hasta yakınlarının en önemli beklentisinin ise “hastalarının eski
sağlığına kavuşması” (%80.0) olduğu belirlenmiştir. Hastaların tamamına yakını
(%97.1) fiziksel sorunlar, büyük çoğunluğu da günlük yaşam aktiviteleri (%87.1)
ile ilgili, psikolojik (%85.3) ve sosyo-ekonomik (%81.8) güçlükler
yaşamaktadır. Hasta yakınları da günlük yaşam aktiviteleri ile ilgili (%80.6),
psikolojik (%81.8) ve sosyo-ekonomik (% 73.5) güçlükler yaşamaktadır.







Sonuç: Bu araştırmanın sonuçları karaciğer transplantasyonu bekleyen hastaların
ve yakınlarının günlük yaşam aktivitelerini etkileyen birçok güçlüğün yanı
sıra, psikolojik ve sosyo-ekonomik güçlüklerle karşılaştıklarını
desteklemektedir. Yaşanan bu güçlüklerin azaltılabilmesi için karaciğer
transplantasyonu bekleyen hasta ve hasta yakınlarına eğitim ve danışmanlık
verilmesi önerilmektedir.

References

  • REFERENCES1. Murray KF, Carithers RL. AASLD practice guidelines: evaluation of the patient for liver transplantation. Hepatology. 2005;41:1407-1432.2. Doğruer K, Ocak İ, Koçak B, Kanmaz T, Acarlı K, Kalayoğlu M.Intensive care management for liver transplantation. Turk J Int Care Med. 2007;7:417-425.3. Yoo MC, West JM, Eason JD, Vanatta JM. The advantages and disadvantages of perioperative transesophageal echocardiography during liver transplantation. J Anesthe Clinic Res. 2012;4:1-3.4. Karademir S. Liver transplantation. Türkiye Klinikleri J Surg Med Sci. 2006;2:40-48.5. The Republic of Turkey Ministry of Health, 2013 Organ Transplant and Dialysis Services Department Current Waiting List. https://organ.saglik.gov.tr (accessed June 2013).6. Aras G. Problems and needs ofliver transplant patients and their families and the level of their contribution to patient care. (Unpublished Master's Thesis). Istanbul, Marmara University, 2006.7. Dalgıç A, Altuntaş B, Özenirler S, Tatlıcıoğlu E.The analises of the patients on waiting list for liver transplantation in Gazı University Medical School. Türkiye Klinikleri J Gastroenterohepatol. 2001;12:164-169.8. Kim WR, Biggins GB, Kremers WK, Wiesner RH, Kamath PS, Benson JT et al. Hyponatremia and mortality among patients on the liver-transplant waiting list. N Engl J Med. 2008;359:1018-1026.9. Wiesinger GF, Quittan M, Zimmermann K, Nuhr M, Wichlas M, Bodingbauer M, et al. Physical performance and health-related quality of life in men on a liver transplantation waiting list. J Rehabil Med. 2001;33:260-265.10. Gündoğdu-Yurdakan S. Evaluation of the quality of life chronic and transplanted liver patients. (Unpublished Master's Thesis). Afyon, Afyon Kocatepe University, 2007.11. Taşdelen P, Ateş M. The needs of home care patients and the burdens of their caregivers. J Ed Res Nurs. 2012;9:22-29.12. Yun YH, Rhee YS, Kang IO, Lee JS, Bang SM, Lee WS. Economic burdens and quality of life of family caregivers of cancer patients. Oncology. 2005;68:107-114.13. Goetzmann L, Wagner-Huber R, Klaghofer R, Muellhaupt B, Clavien PA, Buddeberg C et al. Waiting for a liver transplant: psychosocial well-being, spirituality, and need for counselling. Transplant Proc. 2006;38:2931-2936.14. Guimaro MS, Lacerda SS, Karam CH, Ferraz-Neto BH, Andreoli PB. Psychosocial profile of patients on the liver transplant list. Transplant Proc. 2008;40:782-784.15. Büyükkaya D, Fesci H, Akdemir N. Determine of self-care agency of patients with liver cirrhosis. J Anatolia Nurs Health Sci. 2006;9:14-24.16. Özdemir Ü, Taşcı S. Psychosocial problems and care of chronic diseases. Erciyes University Journal of Health Sciences. 2013;1:57-72.17. Li PK, Chu KH, Chow KM, Lau MF, Leung CB, Kwan BC et al.Cross sectional survey on the concerns and anxiety of patients waiting for organ transplants. Nephrology (Carlton). 2012;17:514-518.18. Schirm V. Quality of life. In Chronic Illness:Impact And Interventions (Eds IM Lubkin, PD Larsen=: 183-209. London:Jones & Bartlett Learning Publishing;2006. 19. Miyazaki ET, Dos Santos R Jr, Miyazaki MC, Domingos NM, Felicio HC, Rocha MF et al. Patients on the waiting list for liver transplantation: caregiver burden and stress. Liver Transpl. 2010;16:1164-1168.20. Littlejohn W, Routledge J. Liver transplatation. In Liver Disease:An Essential Guide for Nurses and Health Care Professionals (Ed Sargent S): 306-323. Hong Kong: Blackwell Publishing, 2009. 21. Fioravanti VL. Liver transplantation. In Organ Transplantation: A Manual For Nurses (Eds BAH Wailliams, KL Grady=: 186-203. New York: Springer Publising, 1991. 22. Bayramova N, Karadakovan A. Determine hopelessness of patients who has a chronic illness. Ataturk University School of Nursing Journal. 2004;7:39-47.23. Telles-Correia D, Barbosa A, Mega I, Monteiro E. Importance of depression and active coping in liver transplant candidates' quality of life. Prog Transplant. 2009;19:85-89.24. Organ Procurement and Transplantation Network (OPTN). National Data, Organ by waiting time. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#. (accessed August 2016).25. Holzner B, Kemmler G, Kopp M, Dachs E, Kaserbacher R, Spechtenhauser B et al. Preoperative expectations and postoperative quality of life in liver transplant survivors. Arch Phys Med Rehabil. 2001;82:73-79.26. Meltzer LJ, Rodrigue JR. Psychological distress in caregivers of liver and lung transplant candidates. J Clin Psychol Med Settings. 2001;8:173-180.27. Claar RL, Parekh PI, Palmer SM, Lacaille RA, Davis RD, Rowe SK et al. Emotional distress and quality of life in caregivers of patients awaiting lung transplant. J Psychosom Res. 2005;59:1-6.28. Younossi Z, Guyatt G, Kiwi M, Boparai N, King D. Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut. 1999;45:295-300.29. Khan FY. Ascites in the State of Qatar: aetiology and diagnostic value of ascitic fluid analysis. Singapore Med J. 2007;48:434-439.30. Can C. The prevalance of psychiatric symptoms and disorders, the quality of life, general cognitive and sexual functions before and one year after liver transplantation (Unpublished Medical Thesis). Izmir, Dokuz Eylul University Faculty of Medicine, 2010.31. Rakoski MO, McCammon RJ, Piette JD, Iwashyna TJ, Marrero JA, Lok AS. Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study. Hepatology. 2012;55:184-191.32. Bernardi M, Ricci CS, Zaccherini G. Role of human albumin in the management of complications of liver cirrhosis. Journal of Clinical and Experimental Hepatology. 2014;4:302-11.33. Ceylan E, Gencer M, Bölükbaşı F. Hepatopulmonary syndrome. Turkiye Klinikleri Arch Lung. 2006;7:40-44.34. Yalçın K. Karaciğer hastalıklarında semptomlar. In Karaciğer Hastalıklarına Klinik Yaklaşım (Eds H Değertekin, K Yalçın=: 29-35. İstanbul, Pars Yayıncılık. 2009. 35. Lasker JN, Sogolow ED, Olenik JM, Sass DA, Weinrieb RM. Uncertainty and liver transplantation: women with primary biliary cirrhosis before and after transplant. Women Health. 2010;50:359-375.36. Maikranz JM, Steele RG, Dreyer ML, Stratman AC, Bovaird JA. The relationship of hope and illness-related uncertainty to emotional adjustment and adherence among pediatric renal and liver transplant recipients. J Pediatr Psychol. 2007;32:571-581.37. Vermeulen KM, Bosma OH, Bij WV, Koëter GH, Tenvergert EM. Stress, psychological distress,and coping in patients on the waiting list for lung transplantation: an exploratory study.Transpl Int. 2005;18:954-959.38. Gündoğan F. Evaluation of self image and self esteem in cirrhosis patients (Unpublished Master's Thesis). Bolu, Abant İzzet Baysal University,2006.39. Rishe E, Azarm A, Bergasa NV. Itch in primary biliary cirrhosis:a patients' perspective. Acta Derm Venereol. 2008;88:34-37.40. Susuzlu M. Assessment of malnutrition, body composition and energy and nutrient intakes in patients with liver cirrhosis (Unpublished Master's Thesis). Ankara, Hacettepe University,2013.41. Caballero JM, Rodríguez AN, Peña PG, Muñoz SC, Beardo ME. Information and knowledge of the main caregiver of the cirrhotic patient. Nure Invest. 2005;13:1-6.42. Son J, Erno A, Shea DG, Femia EE, Zarit SH, Stephens MA. The caregiver stress process and health outcomes. J Aging Health. 2007;19:871-887.43. Saunders MM. Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res. 2008;30:943-959.44. Rodrigue JR, Baz MA. Waiting for lung transplantation: quality of life, mood, caregiving strain and benefit, and social intimacy of spouses. Clin Transplant. 2007;21:722-727.45. Atagun MI, Balaban OD, Atagun Z, Elagoz M, Yılmaz-Ozpolat A. Caregiver burden in chronic diseases. Current Approaches in Psychiatry. 2011;3:513-552.46. Kara T. The difficulties the caregivers attending to patient with obsessive compulsive disorder (OCD) confronted and determination of social support and the states of coping (Unpublished Master's Thesis). Kayseri, Erciyes University, 2007.47. Domínguez-Cabello E, Pérez-San-Gregorio MA, Martín-Rodríguez A, Pérez-Bernal J. Comparison of anxious and depressive symptomatology among pretransplant hepatic patients and their relatives. Transplant Proc. 2010;42:2962-2963.48. Hacımusalar-Demir G. The identification of the problems of caregivers responsible for the nursing of hemodialysis patients (Unpublished Master's Thesis). Kayseri, Erciyes University, 2005.49. Mollaoğlu M, Özkan-Tuncay F, Kars-Fertelli T. Care burden of care givers of stroke patients and related factors. Dokuz Eylul University School of Nursing Electronic Journal. 2011;4:125-130.
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Details

Primary Language English
Subjects Health Care Administration
Journal Section Research
Authors

Tuğba Altuntaş Yıldız 0000-0001-6647-9630

Sevil Güler Demir 0000-0002-4312-560X

Publication Date June 30, 2019
Acceptance Date October 31, 2018
Published in Issue Year 2019 Volume: 44 Issue: 2

Cite

MLA Altuntaş Yıldız, Tuğba and Sevil Güler Demir. “Expectations of Liver Transplantation candidates’ and Their Relatives and Difficulties They Experience”. Cukurova Medical Journal, vol. 44, no. 2, 2019, pp. 669-84, doi:10.17826/cumj.440855.