Experiences of Family of Patient with Newly Diagnosed Advanced Terminal Stage Hepatocellular Cancer

  • Shih, Whei-Mei Jean (Chang Gung University of Science and Technology) ;
  • Hsiao, Ping-Ju (Chang Gung University of Science and Technology & PhD Candidate, National Taipei University of Nursing and Health Sciences) ;
  • Chen, Min-Li (Chang Gung University of Science and Technology) ;
  • Lin, Mei-Hsiang (Chang Gung University of Science and Technology)
  • Published : 2013.08.30


Background: Hepatocellular carcinoma (HCC) is the most common primary liver cancer and the third leading cause of cancer-related death worldwide due to its generally poor prognosis. Caregiver burden for liver cancer cases is higher than with other cancer and needs especial attention. Methods: To explore the experiences of families of patients with newly diagnosed advanced terminal stage hepatocellular cancer by interview. Results: Nine participants were recruited in this study. Content analysis of the interviews revealed four themes: blaming oneself, disrupting the pace of life, searching all possible regimens, and not letting go. Conclusions: This study provides new insight into the needs and support of family members especially when they are facing loved ones with newly diagnosed advanced terminal stage HCC. These results will inform future supportive care service development and intervention research aimed at providing assistance in reducing unmet supportive care needs and psychological distress of these family members.


HCC;liver cancer;qualitative experiences;family members;Taiwan


  1. Beasley RP (1988). Hepatitis B virus. The major etiology of hepatocellular carcinoma. Cancer, 61, 1942-56.<1942::AID-CNCR2820611003>3.0.CO;2-J
  2. Beasley RP, Hwang LY, Lin CC, et al (1981). Hepatocellular carcinoma and hepatitis B virus. A prospective study of 22, 707 men in Taiwan. Lancet, 2, 1129-33.
  3. Chen DS (1993). From hepatitis to hepatoma: lessons from tye B viral hepatitis. Science, 262, 369-70.
  4. Curado MP, Edwards B, Shin HR, et al (2007). Cancer Incidence in Five Continents, Vol. IX, in IARC Scienti c Publications, No. 160. Lyon, France.
  5. Emanuel EJ, Fairclough DL, Slutsman J, et al (1999). Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med, 341, 956-63.
  6. Emanuel EJ, Fairclough DL, Slutsman J, et al (2000). Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med, 132, 451-9.
  7. Executive Yuan, Taiwan, ROC. Department of Health (2013). Statistics of causes of death. Retrieved from (5/21/2013)
  8. Gaugler JE, Eppinger A, King J, et al (2013). Coping and its effect on cancer caregiving. Supportive Care in Cancer, 21, 385-95.
  9. Given BA, Given CW, Kozachik S (2001). Family support in advanced cancer. CA Cancer J Clin, 51, 213-31.
  10. Goldstein NE, Concato J, Fried TR, et al (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care, 20, 38-43.
  11. Grunfeld E, Coyle D, Whelan T, et al (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ, 170, 1795-801.
  12. Guldin MB, Vedsted P, Zachariae R et al (2012). Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Support Care Cancer, 20, 1679-85.
  13. Harrington V, lackey N, Gates M (1996). Needs of caregiver and clinic hospice cancer patients. Cancer Nurs, 19, 118-25.
  14. Hospital Foundation of Taiwan. Hospice and Palliative Care in Taiwan, retrieved from, June, 1, 2013.
  15. Hua H, Qin S, Rui J, et al (2011). Pharmacokinetics of arsenic trioxide (As2 O3) in Chinese primary hepatocarcinoma patients. Asian Pac J Cancer Prev, 12, 61-5.
  16. Konno T (1990). Targeting cancer chemotherapeutic agents by use of lipiodol contrast medium. Cancer, 66, 1897-903.<1897::AID-CNCR2820660907>3.0.CO;2-J
  17. Kristjanson L, Ashcroft T (1994). The family s cancer journey: a literature review. Cancer Nurs, 17, 1-17.
  18. Kwon YC, Yun YH, Lee KH, et al (2006). Symptoms in the lives of terminal cancer patients: which is the most important? Oncology, 71, 69-76.
  19. Laizner A, Shedga Y, Rag F, et al (1993). Needs of family caregivers of persons with cancer: a review. Semin Oncol Nurs, 9, 114-20.
  20. Lee HS, Kim KM, Yoon JH, et al (2002). Therapeutic efficacy of transcatheter arterial chemoembolization as compared with hepatic resection in hepatocellular carcinoma patients with compensated liver function in a hepatitis B virus-endemic area: a prospective cohort study. J Clin Oncol, 20, 4459-65.
  21. Lin CC (2010). Epidemiology and Treatment Trend on Liver Cancer in Taiwan. Taipei J Chin Med, 16, 75-96.
  22. Lincoln Y, Guba E (1985). Naturalistic Enquiry. London, England: Sage.
  23. Llovet JM, Burroughs A, Bruix J (2003). Hepatocellular carcinoma. Lancet, 362, 1907-17.
  24. Llovet JM, Real MI, Montana X, et al (2002). Arterial embolisation or chemoembolisation versus symptomatic treatment in patients with unresectable hepatocellular carcinoma: a randomized controlled trial. Lancet, 359, 1734-39.
  25. Lo CM, Ngan H, Tso WK, et al (2002). Randomized controlled trial of transarterial lipiodol chemoembolization for unresectable hepatocellular carcinoma. Hepatology, 35, 1164-71.
  26. Mao YM, Luo ZY, Li B, et al (2012). Prospective study on the survival of HCC patients treated with transcatheter arterial lipiodol chemoembolization. Asian Pac J Cancer Prev, 13, 1039-42.
  27. Mason J (2004). Qualitative Researching. London: Sage Publications.
  28. McCorkle R, Pasacreta JV (2001). Enhancing caregiver outcomes in palliative care. Cancer Control, 8, 36-45.
  29. Mosher CE, Jaynes HA, Hanna N, et al (2001). Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer, 21, 431-7.
  30. Parkin DM, Bray F, Ferlay J, et al (2001). Estimating the world cancer burden: GLOBOCAN 2000. Int J Cancer, 94, 153-6.
  31. Parkin DM, Bray F, Ferlay J, et al (2005). Global cancer statistics. CA Cancer J Clin, 55, 74-108.
  32. Rabow MW, Hauser JM, Adams J (2004). Supporting family caregivers at the end of life: they don t know what they don t know. JAMA, 291, 483-91.
  33. Shariff M, Cox IJ, Gomaa AI, et al (2009). Hepatocellular carcinoma: current trends in worldwide epidemiology, risk factors, diagnosis and therapeutics. Expert Rev Gastroenterol Hepatol, 3, 353-67.
  34. Shaw J, Harrison J, Young J et al (2013). Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study if family caregivers role perception and supportive care needs. Support Care Cancer, 21, 249-56.
  35. Silverman D (2001). Interpreting Qualitative Data. Methods for Analysing Talk, Text and Interaction. Sage Publications: London, 2001.
  36. Silverman D (2000). Doing Qualitative Research. A practical Handbook. Sage Publication: London.
  37. Song JI, Shin DW, Choi JY et al (2011). Quality of life and mental health in family caregivers of patients with terminal cancer. Support Care Cancer, 19, 1519-26.
  38. Steele R, Fitch M (1996). Needs of family caregivers of patients receiving home hospice care for cancer. Oncol Nurs Forum, 23, 823-8.
  39. Strauss A, Corbin J (1990). Basics of qualitative research: grounded theory procedures and techniques. Newbury Park: Sage
  40. Ugalde A, Krishnasamy M, Schofield P (2012). Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study. Support Care Cancer, 20, 1175-81.
  41. Wang LC, Chen WY, Chang SC, et al (2011). Caregiving burden and associated factors among caregivers of terminally ill gastrointestinal cancer patients. Hu Li Za Zhi, 58, 54-64.
  42. Wong RK, Franssen E, Szumacher E, et al (2002). What do patients living with advanced cancer and their carers want to know? - a needs assessment. Support Care Cancer, 10, 408-15.
  43. Yetes P (1999). Family coping: issues and challenges for cancer nursing. Cancer Nurs, 22, 63-71.

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