대한간호학회지 (Journal of Korean Academy of Nursing)

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

DOI QR Code

재가 중증 근위축성측삭경화증 환자 및 가족 돌봄제공자의 특성과 가족 돌봄제공자의 건강관련 삶의 질 관련성

Correlation between Severe ALS Patient-Caregiver Couples' Characteristics and Caregivers' Health Related Quality of Life

  • 김명수 (부경대학교 간호학과) ;
  • 신형익 (서울대학교 의과대학 재활의학교실) ;
  • 민유선 (분당서울대학교병원 재활의학교실) ;
  • 김정윤 (서울대학교 의과대학 재활의학교실) ;
  • 김정순 (부산대학교 간호대학)
  • Kim, Myoung-Soo (Department of Nursing, Pukyong National University) ;
  • Shin, Hyung-Ik (Department of Rehabilitation Medicine, College of Medicine, Seoul National University) ;
  • Min, Yu-Sun (Department of Rehabilitation Medicine, Seoul National University, Bundang Hospital) ;
  • Kim, Jung-Yoon (Department of Rehabilitation Medicine, Seoul National University Hospital) ;
  • Kim, Jung-Soon (College of Nursing, Pusan National University College of Nursing)
  • 투고 : 2010.11.24
  • 심사 : 2011.06.07
  • 발행 : 2011.06.30
PDF 다운로드
⟨ 이전 논문 다음 논문 ⟩

초록

Purpose: The purpose of this cross-sectional study was to examine the relationship between characteristics of severe ALS patient-caregiver couples and health related quality of life (HRQoL) in family caregivers. Methods: The participants in this study were 89 pairs of ALS patients using ventilators and a family caregiver. The characteristics of the ALS patients and caregivers, Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, Zarit Burden Interview and SF-36 were measured in this study. The data were collected from August 2008 to April 2009. Descriptive statistics, Pearson correlation coefficients, and canonical correlation were used for data analysis. Results: The physical component summary and mental component summary of the HRQoL score for family caregivers were $147.49{\pm}31.63$ and $129.09{\pm}35.83$, respectively. HRQoL for caregivers was related to characteristics of the ALS patient-caregiver couples, such as patient's gender, caregiver's age, gender, marital status, daily time spent in caregiving and burden with one significant canonical variable. The significant variate showed that the lower the age, the time spent in caregiving and the burden of caregivers, the higher the HRQoL of caregivers. Conclusion: The support systems for caregivers considering caregiver characteristics such as demographics and burden should be implemented to improve the HRQoL of caregivers.

키워드

참고문헌

  1. Bremer, B. A., Simone, A. L., Walsh, S., Simmons, Z., & Felgoise, S. H. (2004). Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: The role of positive self-perception and religiosity. Annals of Behavioral Medicine, 28, 119-125. https://doi.org/10.1207/s15324796abm2802_7
  2. Calvo, A., Moglia, C., Ilardi, A., Cammarosano, S., Gallo, S., Canosa, A., et al. (2011). Religiousness is positively associated with quality of life of ALS caregivers. Amyotrophic Lateral Sclerosis. doi:10.3109/17482968.2011.560947
  3. Carod-Artal, F. J., Ferreira-Coral, L., Trizotto, D. S., & Menezes-Moreira, C. (2009). Burden and perceived health status among caregivers of stroke patients. Cerebrovascular Diseases, 28, 472-480. doi:10.1159/000236-525
  4. Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., et al. (2007). A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology, 68, 923-926. https://doi.org/10.1212/01.wnl.0000257093.53430.a8
  5. Goldstein, L. H., Atkins, L., Landau, S., Brown, R. G., & Leigh, P. N. (2006). Longitudinal predictors of psychological distress and self-esteem in people with ALS. Neurology, 67, 1652-1658. https://doi.org/10.1212/01.wnl.0000242886.91786.47
  6. Haverkamp, L. J., Appel, V., & Appel, S. H. (1995). Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain, 118, 707-719. https://doi.org/10.1093/brain/118.3.707
  7. Hecht, M. J., Graesel, E., Tigges, S., Hillemacher, T., Winterholler, M., Hilz, M. J., et al. (2003). Burden of care in amyotropic lateral sclerosis. Palliative Medicine, 17, 327-333. https://doi.org/10.1191/0269216303pm754oa
  8. 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, 890-896. doi:10.1016/S0885-3924(03)00323-3
  9. Kim, H. Y., Park, K. H., Koh, S. H., Lee, S. C., Nam, Y. H., Kim, J. H., et al. (2007). Korean version of amyotrophic lateral sclerosis functional rating scale-revised: A pilot study on the reliability and validity. Journal of the Korean Neurological Association, 25, 149-154.
  10. Kim, J. S., Kim, M. S., Kim, S. O., Yoo, Y. J., & Won, D. Y. (2007). Factors influencing dementia caregivers' health-related quality of life. Journal of Korean Academy of Community Health Nursing, 18, 232-241.
  11. Korea Centers for Disease Control and Prevention. (2009). Guidance to medical expenses support of the patients with rare and incurable disease. Seoul: Ministry for health welfare and family affairs.
  12. Lee, E. H., Jeong, Y. H., Kim, J. S., Song, R. Y., & Hwang, K. Y. (2003). Statistical method for health care research. Seoul: Koonja Publisher.
  13. Lee, H. S., Kim, D. K., Ko, H. J., Gu, H. M., Kwon, U. J., & Kim, J. H. (2004). Measurement of stress in the caregivers of dementia patients: Reliability and validity of the revised-memory and behavior problem checklist and the burden interview. Korean Journal of Clinical Psychology, 23, 1029-1050.
  14. Lo Coco, D., Marchese, S., La Bella, V., Piccoli, T., & Lo Coco, A. (2007). The amyotrophic lateral sclerosis functional rating scale predicts survival time in amyotrophic lateral sclerosis patients on invasive mechanical ventilation. Chest, 132, 64-69. https://doi.org/10.1378/chest.06-2712
  15. Lopez-Bastida, J., Perestelo-Perez, L., Monton-Alvarez, F., Serrano-Aguilar, P., & Alfonso-Sanchez, J. L. (2009). Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain. Amyotrophic Lateral Sclerosis, 10, 237-243. doi:10.1080/1748296-0802430781
  16. Mitsumoto, H., & DelBene, M. (2000). Improving the quality of life for people with ALS: The challenge ahead. Amyotrophic Lateral Sclerosis Other Motor Neuron Disorders, 1, 329-336. https://doi.org/10.1080/146608200300079464
  17. Mitsumoto, H., & Rabkin, J. G. (2007). Palliative care for patients with amyotrophic lateral sclerosis: "Prepare for the worst and hope for the best". Journal of the American Medical Association, 298, 207-216. doi:10.1001/jama.298.2.207
  18. Morimoto, T., Schreiner, A. S., & Asano, H. (2003). Caregiver burden and health related quality of life among Japanese stroke caregivers. Age and Ageing, 32, 218-223. doi:10.1093/ageing/32.2.218
  19. Nolan, M. T., Kub, J., Hughes, M. T., Terry, P. B., Astrow, A. B., Carbo, C. A., et al. (2008). Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliative & Support Care, 6, 273-280. doi:10.1017/S1478951508000412
  20. 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, 252-259.
  21. Phukan, J., & Hardiman, O. (2009). The management of amyotrophic lateral sclerosis. Journal of Neurology, 256, 176-186. doi:10.1007/s00415-009-0142-9
  22. Rabkin, J. G., Albert, S. M., Rowland, L. P., & Mitsumoto, H. (2009). How common is depression among ALS caregivers? A longitudinal study. Amyotrophic Lateral Sclerosis, 10, 448-455. doi:10.3109/174829608-02459889
  23. Rabkin, J. G., Wagner, G. W., & Del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine, 62, 271-279.
  24. Roach, A. R., Averill, A. J., Segerstrom, S. C., & Kasarskis, E. J. (2009). The dynamics of quality of life in ALS patients and caregivers. Annals Behavioral Medicine, 37, 197-206. doi: 10.1007/s12160-009-9092-9
  25. Scholzel-Dorenbos, C. J., Draskovic, I., Vernooij-Dassen, M. J., & Olde Rikkert, M. G. (2009). Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Disease and Associated Disorders, 23, 171-177. doi:10.1097/WAD.0b013e318190a260
  26. Ware, J. E., Kosinski, M., & Dewey, J. E. (2000). How to score version 2 of the SF-36 health survey (standard & acute forms). Lincoln, RI: Quality Metric Incorporated.
  27. Winter, Y., Schepelmann, K., Spottke, A. E., Claus, D., Grothe, C., Schroder, R., et al. (2010). Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. Journal of Neurology, 257, 1473-1481. doi:10.1007/s00415-010-5549-9
  28. Wolfson, C., Kilborn, S., Oskoui, M., & Genge, A. (2009). Incidence and prevalence of amyotrophic lateral sclerosis in Canada: A systematic review of the literature. Neuroepidemiology, 33, 79-88. doi:10.1159/000222089
  29. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20, 649-655. https://doi.org/10.1093/geront/20.6.649

피인용 문헌

  1. 가정용 인공호흡기를 적용한 희귀·난치성질환자를 돌보는 가족간호자의 부담감과 삶의 질 영향요인 vol.26, pp.2, 2014, https://doi.org/10.7475/kjan.2014.26.2.191
  2. 근위축성측삭경화증 환자를 돌보는 가족의 우울과 간병 부담감 vol.45, pp.2, 2011, https://doi.org/10.4040/jkan.2015.45.2.202
  3. Socioeconomic costs of amyotrophic lateral sclerosis according to staging system vol.16, pp.3, 2011, https://doi.org/10.3109/21678421.2014.999791
  4. 근위축성측삭경화증 가족 돌봄제공자의 심리사회적 안녕감에 영향을 미치는 요인 vol.48, pp.4, 2011, https://doi.org/10.4040/jkan.2018.48.4.454
  5. Association of physical and psychological health status between chronic obstructive pulmonary disease patients and their family caregivers vol.40, pp.10, 2019, https://doi.org/10.1080/07399332.2019.1617292
  6. Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis vol.52, pp.5, 2011, https://doi.org/10.1097/jnn.0000000000000534
  7. 영남권역에서 가정용 인공호흡기를 사용하는 환자 가족간병인의 간병 부담과 삶의 질 vol.10, pp.1, 2011, https://doi.org/10.18598/kcbot.2020.10.1.04