The Journal of Korean society of community based occupational therapy (대한지역사회작업치료학회지)

Korean Society of Community Based Occupational Therapy Association (대한지역사회작업치료학회)
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Survey on the Care Burden and Quality of Life in Family Caregivers of Patients Using Home Mechanical Ventilator in Yeongnam Region, Korea

영남권역에서 가정용 인공호흡기를 사용하는 환자 가족간병인의 간병 부담과 삶의 질

  • Son, Ju-Hyun (Department of Rehabilitation Medicine, Pusan National University Yangsan Hospital) ;
  • Moon, Myung-Hoon (Department of Rehabilitation Medicine, Keunsol Hospital) ;
  • Cho, Mi-Kyung (Department of Rehabilitation Medicine, Pusan National University Hospital) ;
  • Yun, Ra-Yu (Department of Rehabilitation Medicine, Pusan National University Yangsan Hospital) ;
  • Huh, Sung-Chul (Department of Rehabilitation Medicine, Pusan National University Yangsan Hospital) ;
  • Min, Ji-Hong (Department of Rehabilitation Medicine, Pusan National University Yangsan Hospital) ;
  • Moon, Jung-In (Department of Occupational Therapy, Pusan National University Yangsan Hospital) ;
  • Kim, Soo-Yeon (Department of Rehabilitation Medicine, Pusan National University Yangsan Hospital)
  • 손주현 (양산부산대학교병원 재활의학과) ;
  • 문명훈 (큰솔병원 재활의학과) ;
  • 조미경 (부산대학교병원 재활의학과) ;
  • 윤라유 (양산부산대학교병원 재활의학과) ;
  • 허성철 (양산부산대학교병원 재활의학과) ;
  • 민지홍 (양산부산대학교병원 재활의학과) ;
  • 문정인 (양산부산대학교병원 작업치료실) ;
  • 김수연 (양산부산대학교병원 재활의학과)
  • Received : 2020.03.20
  • Accepted : 2020.04.16
  • Published : 2020.04.30
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Abstract

Objective : The aim of this study was to investigate the care burden and life quality in family caregivers of community-dwelling patients using home mechanical ventilator(HMV) in Yeognam region. Methods : Survey performed to family caregivers of the patients using HMV in Yeognam region, Korea. The questionnaire is composed with patient care and the burden on caring. Korean version of Short Form Zarit Burden Interview(K-ZBI-12) and 3-Level version of EuroQol-5 Dimension applying Korean weight(KEQ-5D-3L) were also investigated. Statistical significance was accepted for p<.05. Results : A total 98 out of 150 questionnaires were analyzed. The K-ZBI-12(33.08±10.34) had a correlation with KEQ-5D-3L(0.71±0.25) negatively(p=.038). Patients' age, duration of HMV, financial burden and professional caregivers' care time had correlations with K-ZBI-12 positively(p<.05). KEQ-5D-3L correlated duration of HMV negatively(p=.017). Invasive ventilator group had lower KEQ-5D-3L than the non-invasive ventilator group(p=.008). K-ZBI-12 was lower in more than one caregiver care of patients than in one(p=.001). Conclusion : This study revealed high care burden and low quality of life in family caregivers of the patients with HMV in Yeongnam region, Korea. Efforts are needed to continually identify the needs of patients and their families, and the socioeconomic support and medical services associated with HMV.

목적 : 본 연구는 영남권역 내 가정에서 인공호흡기 사용 환자를 돌보는 가족간병인이 느끼는 간병 부담과 삶의 질을 알아보고자 하였다. 연구방법 : 영남권역 내에 거주하며 가정에서 인공호흡기를 사용하는 환자를 돌보는 주간병인을 대상으로 설문조사를 시행하였고 가족간병인의 응답 내용을 분석하였다. 설문지는 환자의 정보, 간병 실태 및 추가 지원 요구 사항 등으로 구성하였다. 가족간병인의 간병 부담과 삶의 질을 평가하기 위해 각각 Korean version of Short Form Zarit Burden Interview(K-ZBI-12)과 한국형 가중치 모형에 따라 교정한 3-Level version of EuroQol-5 Dimension(KEQ-5D-3L)을 사용하였다. 통계적 유의수준은 p<0.05로 하였다. 결과 : 총 150명 중 주간병인이 가족간병인인 98명을 분석하였다. 환자의 연령은 54.10±17.94세, 성별은 남자 74명(75.5%), 여자 24명(24.5%)이었고 주 진단은 신경근육계 질환이 83명(84.7%)으로 가장 많았다. 가족간병인의 K-ZBI-12 점수는 33.08±10.34로 간병에 대한 고부담을 보였고 EQ-5D-3L 점수는 0.71±0.25로 두 항목은 음의 상관관계를 보였다(p=.038). 환자의 연령, 인공호흡기 사용기간, 의료비에 대한 가족간병인의 경제적 부담, 간병비에 대한 가족간병인의 경제적 부담 및 전문간병인의 참여 시간은 K-ZBI-12 점수와 각각 통계적으로 유의한 상관관계를 보였다. KEQ-5D-3L 점수는 가정용 인공호흡기의 사용기간과 음의 상관관계를 나타냈다(p=.017). 환자가 침습적 인공호흡기를 사용하는 경우 비침습적 인공호흡기를 사용하는 경우보다 가족간병인의 KEQ-5D-3L 점수가 낮았다(p=.008). 간병에 참여하는 인원이 두 명 이상인 경우가 한 명인 경우보다 K-ZBI-12 점수가 낮았다(p=.001). 가족간병인이 추가지원을 바라는 요구사항 중 경제적 지원에 대한 요구도가 가장 높게 조사되었다. 결론 : 영남권역에서 가정용 인공호흡기를 사용하는 환자들의 보호자가 느끼는 간병 부담이 크고 삶의 질이 낮다는 것을 알 수 있다. 가족간병인의 간병 부담과 삶의 질을 개선하기 위해서 지역에서 실질적으로 필요한 사회경제적 지원 및 환자와 가족들의 요구 사항을 확인하고 추가적인 지원을 위한 노력이 필요하다.

Keywords

References

  1. Bae, K. Y., Shin, I. S., Kim, S. W., Kim, J. M., Yang, S. J., Mun, J. U., et al. (2006). Care burden caregivers according to cognitive function of elderly persons. Journal of the Korean Society of Biological Therapies in Psychiatry, 12, 66-75.
  2. Chio, A., Calvo, A., Moglia, C., Gamna, F., Mattei, A., Mazzini, L., et al. (2012). Non-invasive ventilation in amyotrophic lateral sclerosis: A 10 year population based study. Journal of Neurology, Neurosurgery and Psychiatry, 83(4), 377-381.
  3. Douglas, S. L., & Daly, B. J. (2003). Caregivers of long-term ventilator patients: Physical and psychological outcomes. Chest, 123(4), 1073-1081. https://doi.org/10.1378/chest.123.4.1073
  4. EuroQol Group (1990). EuroQol-A new facility for the measurement of health-related quality of life. Health Policy, 16(3), 199-208. https://doi.org/10.1016/0168-8510(90)90421-9
  5. Gelinas, D. F., O'Connor, P., & Miller, R. G. (1998). Quality of life for ventilator-dependent ALS patients and their caregivers. Journal of the Neurological Sciences, 160(Suppl. 1), S134-S136. https://doi.org/10.1016/S0022-510X(98)00212-3
  6. Gratao, A. C. M., Brigola, A. G., Ottaviani, A. C., Luchesi, B. M., Souza, E. N., Rossetti, E. S., et al. (2019). Brief version of Zarit Burden Interview(ZBI) for burden assessment in older caregivers. Dementia & Neuropsychologia, 13(1), 122-129. https://doi.org/10.1590/1980-57642018dn13-010015
  7. Higginson, I. J., Gao, W., Jackson, D., Murray, J., & Harding, R. (2010). Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63(5), 535-542. https://doi.org/10.1016/j.jclinepi.2009.06.014
  8. Hind, M., Polkey, M. I., & Simonds, A. K. (2017). AJRCCM: 100-year anniversary. Homeward bound: A centenary of home mechanical ventilation. American Journal of Respiratory and Critical Care Medicine, 195(9), 1140-1149. https://doi.org/10.1164/rccm.201702-0285CI
  9. Hwang, M. S., Lee, M. K., & Song, J. R. (2014). The factors affecting burdens and quality of life of the family caregivers of patients with rare and incurable diseases using home ventilators. Korean Society of Adult Nursing, 26(2), 191-202. https://doi.org/10.7475/kjan.2014.26.2.191
  10. Kaub-Wittemer, D., Steinbuchel, N., Wasner, M., Laier-Groeneveld, G., & Borasio, G. D. (2003). Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain and Symptom Management, 26(4), 890-896. https://doi.org/10.1016/S0885-3924(03)00323-3
  11. Kim, D. H., Kang, S. W., & Choi, W. A. (2014). Home mechanical ventilation in South Korea. Yonsei Medical Journal, 55(6), 1729-1735. https://doi.org/10.3349/ymj.2014.55.6.1729
  12. Kim, D. H., Kang, S. W., Choi, W., Moon, J. H., Baek, J. H., Choi, S. H., et al. (2010). A research on the management of ventilatory insufficiency in patients with neuromuscular diseases. Journal of Korean Academy of Rehabilitation Medicine, 34(3), 347-354.
  13. Kim, M. S., Shin, H. I., Min, Y., Kim, J. Y., & Kim, J. S. (2011). Correlation between severe ALS patientcaregiver couples' characteristics and caregivers' health related quality of life. Journal of Korean Academy of Nursing, 41(3), 354-363. https://doi.org/10.4040/jkan.2011.41.3.354
  14. Korea Centers for Disease Control & Prevention. (2011). Validity and reliability evaluation for EQ-5D in Korea. Retrieved March 16, 2020, from http://www.ndsl.kr
  15. Korea Centers for Disease Control & Prevention. (2020). 2020 희귀질환자 의료비지원사업 안내. Retrieved March 16, 2020, from https://helpline.nih.go.kr
  16. Korea Ministry of Government Legislation. (2015). 보건복지부 고시 제2015-231호, 2015. 12. 23. Retrieved March 16, 2020, from http://www.law.go.kr
  17. Korea Ministry of Government Legislation. (2019). 보건복지부 고시 제2019-127호, 2019. 6. 26. Retrieved March 16, 2020, from http://www.law.go.kr
  18. Korea Ministry of Health and Welfare. (2019). 시도별 장애인활동지원 현황. Retrieved March 16, 2020, from https://www.data.go.kr/dataset/3084474/fileData.do
  19. Lee, Y. K., Nam, H. S., Chuang, L. H., Kim, K. Y., Yang, H. K., Kwon, I. S., et al. (2009). South Korean time trade-off values for EQ-5D health states: Modeling with observed values for 101 health states. Value in Health, 12(8), 1187-1193. https://doi.org/10.1111/j.1524-4733.2009.00579.x
  20. Lewarski, J. S., & Gay, P. C. (2007). Current issues in home mechanical ventilation. Chest, 132(2), 671-676. https://doi.org/10.1378/chest.07-0558
  21. Min, Y., Kim, J. Y., Kim, M., Kim, J. S., Kim, H. L., & Shin, H. I. (2010). Quality of life and care burden of caregivers of ventilator-dependent amyotrophic lateral sclerosis patients. Journal of Korean Academy of Rehabilitation Medicine, 34(4), 442-450.
  22. Park, J. H., Kang, S. W., Kim, E. J., & Ha, Y. R. (2004). Quality of life in patients with neuromuscular disease using mechanical ventilatory support. Journal of Korean Academy of Rehabilitation Medicine, 28(2), 157-162.
  23. Park, K. H., Kim, H. Y., Nam, Y. H., Kim, J., Joo, I. S., Sung, J. J., et al (2006). 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, 24(3), 252-259.
  24. Tsara, V., Serasli, E., Voutsas, V., Lazarides, V., & Christaki, P. (2006). Burden and coping strategies in families of patients under noninvasive home mechanical ventilation. Respiration, 73(1), 61-67. https://doi.org/10.1159/000087460
  25. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20(6), 649-655. https://doi.org/10.1093/geront/20.6.649