Journal of Korean Academy of Nursing (대한간호학회지)

Korean Society of Nursing Science (한국간호과학회)
권호 표지
DOI QR코드

DOI QR Code

Depression and Caregiving Burden in Families of Patients with Amyotrophic Lateral Sclerosis

근위축성측삭경화증 환자를 돌보는 가족의 우울과 간병 부담감

  • Oh, Juyeon (College of Nursing, Hanyang University.Hanyang Cell Therapy Center, Hanyang University Seoul Hospital) ;
  • An, Ji Won (Department of Nursing, Far East University) ;
  • Oh, Ki-Wook (Department of Neurology, College of Medicine, Hanyang University.Hanyang Cell Therapy Center, Hanyang University Seoul Hospital) ;
  • Oh, Seong-Il (Department of Neurology, Busan Paik Hospital, Inje University College of Medicine) ;
  • Kim, Jung A (College of Nursing, Hanyang University) ;
  • Kim, Seung Hyun (Department of Neurology, College of Medicine, Hanyang University.Hanyang Cell Therapy Center, Hanyang University Seoul Hospital) ;
  • Lee, Jeong Seop (College of Nursing, Hanyang University)
  • 오주연 (한양대학교 간호학부.한양대학교병원 세포치료센터) ;
  • 안지원 (극동대학교 간호학과) ;
  • 오기욱 (한양대학교 의과대학 신경과학교실.한양대학교병원 세포치료센터) ;
  • 오성일 (인제대학교 의과대학 신경과학교실) ;
  • 김정아 (한양대학교 간호학부) ;
  • 김승현 (한양대학교 의과대학 신경과학교실.한양대학교병원 세포치료센터) ;
  • 이정섭 (한양대학교 간호학부)
  • Received : 2014.06.25
  • Accepted : 2015.01.10
  • Published : 2015.04.30
Download PDF
⟨ Previous Next ⟩

Abstract

Purpose: The purpose of this study was to describe depression, caregiving burden and the correlation of the two variables in the families of patients with amyotrophic lateral sclerosis (ALS) and to clarify factors predicting caregiving burden. Methods: A descriptive and cross-sectional study was conducted with 139 family members who provided care to patients with ALS. The characteristics of patients and families, Korean-Beck Depression Inventory (K-BDI), Korean version of Zarit Burden Interview (K-ZBI) and Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (K-ALSFRS-R) were used as study measures. Results: The mean score for K-BDI was 19.39 out of 63 suggesting sub-clinical depression and 38.2% of the family members exhibited depression. The mean score for K-ZBI was 66.03 out of 88. The predictors for K-ZBI were K-BDI, age of family member, length of time spent per day in caring, relationship to patient and K-ALSFRS-R. Conclusion: The results of this study suggest that levels of depression and caregiving burden are high among family members caring for patients with ALS. As depression is associated with caregiving burden, screening and emotional supports should be provided to reduce the burden of care for these family. Support programs to alleviate the care burden are also needed, considering family demographics, time per day in caring giving and K-ALSFRS-R.

Keywords

References

  1. Bae JS, Hong YH, Baek W, Sohn EH, Cho JY, Kim BJ, et al. Current status of the diagnosis and management of amyotrophic lateral sclerosis in Korea: A multi-center cross-sectional study. Journal of Clinical Neurology. 2012;8(4):293-300. http://dx.doi.org/10.3988/jcn.2012.8.4.293
  2. Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report of an EFNS task force. European Journal of Neurology. 2012;19(3):360-375. http://dx.doi.org/10.1111/j.1468-1331.2011.03501.x
  3. Sohn EH, Kim BJ, Kim JK, Bae JS, Baek W, Suh BC, et al. Establishment and perspective of the Korean ALS registry. Korean Journal of Clinical Neurophysiology. 2011;13(2):71-79.
  4. Logroscino G, Traynor BJ, Hardiman O, ChioA, Couratier P, Mitchell JD, et al. Descriptive epidemiology of amyotrophic lateral sclerosis: New evidence and unsolved issues. Journal of Neurology, Neurosurgery, and Psychiatry. 2008;79(1):6-11. http://dx.doi.org/10.1136/jnnp.2006.104828
  5. Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. Journal of Neurology. 2001;248(7):612-616. https://doi.org/10.1007/s004150170140
  6. ChioA, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. Caregiver time use in ALS. Neurology. 2006;67(5):902-904. http://dx.doi.org/10.1212/01.wnl.0000233840.41688.df
  7. Chappell NL, Dlitt BH, Hollander MJ, Miller JA, McWilliam C. Comparative costs of home care and residential care. The Gerontologist. 2004;44(3):389-400. https://doi.org/10.1093/geront/44.3.389
  8. Park KH, Kim HY, Nam YH, Kim J, Joo IS, Sung JJ, et al. Preliminary study on clinical characteristics and caregivers' burden of Korean patients with amyotrophic lateral sclerosis; Survey based on database of Korea ALS association. Journal of the Korean Neurological Association. 2006;24(3):252-259.
  9. Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagain D, et al. Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives. Journal of Neurology, Neurosurgery, and Psychiatry. 2011;82(4):413-418. http://dx.doi.org/10.1136/jnnp.2010.232637
  10. Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliative Medicine. 2013;27(5):437-446. http://dx.doi.org/10.1177/0269216312455729
  11. Miyashita M, Narita Y, Sakamoto A, Kawada N, Akiyama M, Kayama M, et al. Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. Journal of the Neurological Sciences. 2009;276(1-2):148-152. http://dx.doi.org/10.1016/j.jns.2008.09.022
  12. Qutub K, Lacomis D, Albert SM, Feingold E. Life factors affecting depression and burden in amyotrophic lateral sclerosis caregivers. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration. 2014;15(3-4):292-297. http://dx.doi.org/10.3109/21678421.2014.886699
  13. Yun MH, Choi-Kwon S. Quality of life and the factors related to family caregivers caring for those with amyotrophic lateral sclerosis. Perspectives in Nursing Science. 2011;8(1):62-72.
  14. Kim MS, Shin HI, Min Y, Kim JY, Kim JS. Correlation between severe ALS patient-caregiver couples' characteristics and caregivers' health related quality of life. Journal of Korean Academy of Nursing. 2011;41(3):354-363. http://dx.doi.org/10.4040/jkan.2011.41.3.354
  15. Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: A comparative study. BMC Neurology. 2012;12:156. http://dx.doi.org/10.1186/1471-2377-12-156
  16. Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2000;1(5):293-299. https://doi.org/10.1080/146608200300079536
  17. Kim HY, Park KH, Koh SH, Lee SC, Nam YH, Kim J, et al. Korean version of amyotrophic lateral sclerosis functional rating scale-revised: A pilot study on the reliability and validity. Journal of the Korean Neurological Association. 2007;25(2):149-154.
  18. Rhee MK, Lee YH, Park SH, Sohn CH, Chung YC, Hong SK, et al. A standardization study of Beck depression inventory I: Korean version (K-BDI): Reliability and factor analysis. Korean Journal of Psychopathology. 1995;4(1):77-95.
  19. Lee HS, Kim DK, Ko HJ, Ku HM, Kwon EJ, Kim JH. Measurement of stress in the caregivers of dementia patients: Reliability and validity of the revised-memory and behavior problem checklist and the burden interview. The Korean Journal of Clinical Psychology. 2004;23(4):1029-1050.
  20. Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychology, Health & Medicine. 2010;15 (6):685-693. http://dx.doi.org/10.1080/13548506.2010.507773
  21. Pagnini F, Lunetta C, Rossi G, Banfi P, Gorni K, Cellotto N, et al. Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotrophic Lateral Sclerosis. 2011;12(2):105-108. http://dx.doi.org/10.3109/17482968.2010.502941
  22. Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine. 2000;62(2):271-279. https://doi.org/10.1097/00006842-200003000-00020
  23. Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotrophic Lateral Sclerosis. 2009;10(5-6):448-455. http://dx.doi.org/10.1080/17482960802459889
  24. ChioA, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005;64(10):1780-1782. http://dx.doi.org/10.1212/01.wnl.0000162034.06268.37
  25. Rhee YS, Yun YH, Park S, Shin DO, Lee KM, Yoo HJ, et al. Depression in family caregivers of cancer patients: The feeling of burden as a predictor of depression. Journal of Clinical Oncology. 2008;26(36):5890-5895. http://dx.doi.org/10.1200/jco.2007.15.3957
  26. Choi-Kwon S, Kim HS, Kwon SU, Kim JS. Factors affecting the burden on caregivers of stroke survivors in South Korea. Archives of Physical Medicine and Rehabilitation. 2005;86(5):1043-1048. http://dx.doi.org/10.1016/j.apmr.2004.09.013
  27. Kim SR, Chung SJ, Im JH, Lee MC. The caregivers' burden in Parkinson's disease. Journal of the Korean Neurological Association. 2005;23(3):335-340.
  28. Oh J, An JW, Oh S-i, Oh KW, Kim JA, Lee JS, et al. Socioeconomic costs of amyotrophic lateral sclerosis according to staging system. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2015 February 3. [Epub ahead of print]. http://dx.doi.org/10.3109/21678421.2014.999791
  29. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patientcaregiver couples. Neurology. 2007;68(12):923-926. http://dx.doi.org/10.1212/01.wnl.0000257093.53430.a8
  30. National Health Insurance. Long term care insurance [Internet]. Seoul: Author; 2013 [cited 2014 September 1]. Available from: http://www.longtermcare.or.kr/portal/longtermcare/sub02_03.jsp.

Cited by

  1. 화상환자 가족의 부담감에 대한 융합적 연구 vol.7, pp.6, 2016, https://doi.org/10.15207/jkcs.2016.7.6.275
  2. Information-seeking Behavior and Information Needs in Patients With Amyotrophic Lateral Sclerosis : Analyzing an Online Patient Community vol.35, pp.7, 2015, https://doi.org/10.1097/cin.0000000000000333
  3. Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis vol.19, pp.1, 2015, https://doi.org/10.1080/21678421.2017.1385636
  4. Caregiving burden and depression in paid caregivers of hospitalized patients: a pilot study in China vol.18, pp.1, 2015, https://doi.org/10.1186/s12889-017-4563-6
  5. 근위축성측삭경화증 가족 돌봄제공자의 심리사회적 안녕감에 영향을 미치는 요인 vol.48, pp.4, 2015, https://doi.org/10.4040/jkan.2018.48.4.454
  6. The amyotrophic lateral sclerosis supportive care needs assessment instrument: Development and psychometric evaluation vol.16, pp.6, 2018, https://doi.org/10.1017/s1478951517001250
  7. Validity and Utility of the Center for Epidemiological Studies Depression Scale for Detecting Depression in Family Caregivers of Persons with Dementia vol.47, pp.4, 2015, https://doi.org/10.1159/000500940
  8. The Impact of Cognitive and Behavioral Symptoms on ALS Patients and Their Caregivers vol.10, pp.None, 2019, https://doi.org/10.3389/fneur.2019.00192
  9. Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis vol.17, pp.6, 2015, https://doi.org/10.1017/s1478951519000221
  10. Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation—A qualitative study vol.29, pp.13, 2015, https://doi.org/10.1111/jocn.15239
  11. Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea vol.18, pp.9, 2021, https://doi.org/10.3390/ijerph18094937
  12. Factors associated with caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy: A cross-sectional study vol.16, pp.7, 2015, https://doi.org/10.1371/journal.pone.0254987