DOI QR코드

DOI QR Code

Caring for Dying Patient with Glioblastoma Multiforme: A Narrative Analysis of the Caring Experience of Family Caregiver

가족 돌봄제공자의 말기 교모세포종 환자 돌봄경험-갈등과정에 대한 내러티브 분석

  • Kim, Myung-Ah (Department of Public Health, Graduate School of Social Development, Chung-Ang University) ;
  • Ryu, Eun-Jung (College of Nursing, Chung-Ang University) ;
  • Hong, Yeon-Pyo (Department of Preventive Medicine, Chung-Ang University College of Medicine)
  • 김명아 (중앙대학교 사회개발대학원 보건학과) ;
  • 류은정 (중앙대학교 간호학과) ;
  • 홍연표 (중앙대학교 의과대학 예방의학교실)
  • Received : 2012.04.23
  • Accepted : 2012.05.23
  • Published : 2012.06.30

Abstract

Purpose: The purpose of this narrative study was to understand how family caregivers interpreted themselves life during caring for dying patients with gliobalstoma, and how they integrated these experiences into their personal biographies. Methods: Three family caregivers were recruited for the study. Data were collected through a series of audio-taped unstructured interviews and conversations with participants. The interviews and observation were conducted between October and November, 2011. Data were analyzed using psychosocial analytical methods that combined case based, in-depth staged analysis of narratives. Results: The life experiences of the family caregivers with a dying family member were summarized as, in their own voices, 'the repetition of gliobalstoma,' 'a smart patient,' 'being obsessed with rehabilitation treatment,' 'the frustration from nothing but just looking at the suffering of the patient,' and 'a stubborn son'. Conclusion: Caregiving was characterised by various roles and life changes from the moment of diagnosis. Family caregivers of brain tumor reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.

Keywords

References

  1. National cancer center. Annual report of cancer statistics in Korea. Available at: http://www.ncc.re.kr/manage/manage03_033_view.jsp [accessed on 11 November 2011].
  2. Cerebrospinal fluid tumor clinic. Brain tumor 100Q 100A. 2nd ed. National Cancer Center. Gyunggi-do:Publishers;2009.
  3. Schmer C, Ward-Smith P, Latham S, Salacz M. When a family member has a malignant brain tumor. J Neurosurg Nurs 2008;40(4):78-84.
  4. Park YH, Yu SJ, Song MS. Caregiver burden of families with stroke patidents and their needs for support group intervention. Korean J Adult Nurs 1999;11:119-31.
  5. Nijboer C, Tempelaar R, Sanderman R, Triemstre M, Spruijt RJ, Geertrudis AM, et al. Cancer and caregiving: The impact on the caregiver's health. Psychooncology 1998;7:3-13.
  6. Chien LY, Lo LH, Chen CJ, Chen YC, Chiang CC, Yu Chao YM. Quality of life among primary caregivers of taiwanese children with brain tumor. Cancer Nurs 2003;26:305-11.
  7. Esther S. Family burden and quality of life. Qual Life Res 2003;12:33-41.
  8. Cho HS, Jeong SU, Kim JS, Gwon JS. Qualitative inquiry and research design: choosing among five approaches. Gyunggi-do:Hakjisa;2010.
  9. Clandinin DJ, Connelly FM. Narrative inquiry: Experience and story in qualitative research. San Francisco:Jossey-Bass;2000.
  10. Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, CA:Sage;1985.
  11. Riessman CK. Narrative analysis. Qualitative research methods series, No. 30. Newbury Park, CA:Sage;1993.
  12. Curren JR. Support needs of brain tumour patients and their carers: the place of a telephone service. Int J Palliat Nurs 2001;7:331-7.
  13. Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K. A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 2010;16:24-30.
  14. Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E . Unmet supportive care needs and interest in services among patients with a brain tumour and their cares. Patient Educ Couns 2008;71:251-8.
  15. Centre for health promotion. University of toronto. The quality of life model-conceptual framework. 1991. Available at: http://www.utoronto.ca/qol/concepts.htm [accessed on 15 Oct 2011]
  16. Schubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 2008;10:61-72.
  17. Sohn SK. Needs of hospice care in families of the hospitalized terminal patients with cancer. J Korean Oncol Nurs 2009;9:1-6.

Cited by

  1. Enduring Through the Suffering of Life : Experiences of Families Caring for Dying Cancer Patients in Korea vol.17, pp.6, 2012, https://doi.org/10.1097/njh.0000000000000191
  2. 입원한 암 환자 가족 돌봄제공자의 디스트레스 경험 vol.29, pp.5, 2012, https://doi.org/10.7475/kjan.2017.29.5.451
  3. Grounded Theoretical Approach on Illness Experience Process in Middle Aged Women with Brain Tumor vol.23, pp.1, 2012, https://doi.org/10.7587/kjrehn.2020.15