Journal of Industrial Convergence (산업융합연구)

DAEHAN Society of Industrial Management (대한산업경영학회)
권호 표지
DOI QR코드

DOI QR Code

Comparison of Responses in Psychological and Supportive Factors Between Proxy and Self-respondents in Severely Disabled

중증장애인의 대리응답 여부에 따른 심리적·지지적 요인의 응답 비교

  • Hyunsuk, Choi (Department of Nursing, Chungnam National University) ;
  • Youngshin, Song (Department of Nursing, Chungnam National University)
  • Received : 2022.07.29
  • Accepted : 2022.11.20
  • Published : 2022.11.28
Download PDF
⟨ Previous Next ⟩

Abstract

This study is a secondary data analysis study to confirm the difference in responses to psychological and supportive factors of severely disabled according to proxy responses using the National Survey of the Disabled 2020. 738,169 people with severe disabilities who were 19 years of age or older, whose main disability was not an intellectual disability, were analyzed. χ2-test and t-test were performed using IBM SPSS Statistics 26.0. As a result of the study, the proxy response was more negative in sadness or hopelessness (χ2=952.20, p<.001), suicidal ideation (χ2=369.45, p<.001), and subjective health status (t=30.61, p<.001). And the proxy respondent answered that they need more support from others for daily life (t=209.43, p<.001) and have many difficulties in communication when using medical services (t=41.74, p<.001). When using a proxy response, the researcher should clearly state the point of view that the proxy respondent should take, and interpret the results considering that proxy response may be affected by various factors.

본 연구는 중증장애인의 대리응답 여부에 따른 심리적·지지적 요인의 응답 차이를 확인하기 위한 연구로 2020년 장애인 실태조사 원시자료를 활용한 이차자료분석 연구이다. 만 19세 이상 성인 중 주장애가 지적장애가 아니고 장애의 정도가 심한 장애인으로 등록된 738,169명을 최종 분석대상으로 하였다. 자료 분석은 IBM SPSS Statistics 26.0을 이용하여 실수, 백분율, 평균과 표준오차를 확인하였고 χ2-test와 t-test를 실시하였다. 분석결과, 대리응답군이 자가응답군에 비해 슬픔이나 절망감(χ2=952.20, p<.001), 자살 생각(χ2=369.45, p<.001), 주관적 건강상태(t=30.61, p<.001)에서 더 부정적인 응답을 보였으며, 일상생활을 하는데 타인의 지원이 더 많이 필요하고(t=209.43, p<.001) 의료서비스 이용 시 의사소통에 어려움이 더 많다(t=41.74, p<.001)고 응답하였다. 대리응답을 허용하는 경우 연구자는 대리응답자가 취해야 할 관점을 명확히 명시하고, 대리응답은 다양한 요인에 의해 영향을 받을 수 있음을 고려하여 연구결과를 해석해야 한다.

Keywords

References

  1. D. I. Chun & J. H. Jeon. (2019). A study on the agreement and bias between parents' proxy report and self-report of people with developmental disabilities. Journal of Convergence for Information Technology, 9(5), 201-209. DOI : https://doi.org/10.22156/CS4SMB.2019.9.5.201
  2. Oczkowski, C., & O'Donnell, M. (2010). Reliability of proxy respondents for patients with stroke: a systematic review. Journal of Stroke and Cerebrovascular Diseases, 19(5), 410-416. DOI : https://www.sciencedirect.com/science/article/pii/S1052305709001591?via%3Dihub 1052305709001591?via%3Dihub
  3. Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Medical care, 43(5), 493. DOI : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1188232/pdf/nihms2320.pdf
  4. Williams, L. S., Bakas, T., Brizendine, E., Plue, L., Tu, W., Hendrie, H., & Kroenke, K. (2006). How valid are family proxy assessments of stroke patients' health-related quality of life? Stroke, 37(8), 2081-2085. DOI : https://www.ahajournals.org/doi/pdf/10.1161/01.STR.0000230583.10311.9f?download=true
  5. Gadow, S. (1989). Clinical subjectivity. Advocacy with silent patients. The Nursing Clinics of North America, 24(2), 535-541. https://doi.org/10.1016/S0029-6465(22)01505-5
  6. Wilson, K. A., Dowling, A. J., Abdolell, M., & Tannock, I. F. (2000). Perception of quality of life by patients, partners and treating physicians. Quality of Life Research, 9(9), 1041-1052. DOI : https://www.jstor.org/stable/4037964 https://doi.org/10.1023/a:1016647407161
  7. Duncan, P. W., Lai, S. M., Tyler, D., Perera, S.,Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the stroke impact scale. Stroke, 33(11), 2593-2599. DOI : https://www.ahajournals.org/doi/pdf/10.1161/01.STR.0000034395.06874.3E?download=true
  8. Hilari, K., Owen, S., & Farrelly, S. J. (2007). Proxy and self-report agreement on the stroke and aphasia quality of life scale-39. Journal of Neurology, Neurosurgery & Psychiatry, 78(10), 1072-1075. DOI : http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=fulltext&D=ovft&CSC=Y&NEWS=N&SEARCH=00005069-200710000-00010.an 10000-00010.an
  9. Lapin, B. R., Thompson, N. R., Schuster, A., & Katzan, I. L. (2019). Patient versus proxy response on global health scales: No meaningful difference. Quality of Life Research, 28(6), 1585-1594. DOI : https://link.springer.com/article/10.1007/s11136-019-02130-y
  10. S. Lee, Mathiowetz, N. A., & Tourangeau, R. (2004). Perceptions of disability: the effect of self-and proxy response. Journal of Official Statistics, 20(4), 671. DOI : https://www.scb.se/contentassets/ca21efb41fee47d293bbee5bf7be7fb3/perceptions-of-disability-the-effect-of-self--and-proxy-response.pdf
  11. Landgraf, J. M. (1999). Measuring health-related quality of life in pediatric oncology patients: a brief commentary on the state of the art of measurement and application (discussion). International Journal of Cancer, 83(SUPPL. 12), 147. DOI : https://library.cnu.ac.kr/eds/detail/edselc_edselc.2-52.0-0033253564
  12. Kozlowski, A. J., Singh, R., Victorson, D., Miskovic, A., Lai, J.-S., Harvey, R. L., . . . Heinemann, A. W. (2015). Agreement between responses from community-dwelling persons with stroke and their proxies on the NIH neurological quality of life (Neuro-QoL) short forms. Archives of physical medicine and rehabilitation, 96(11), 1986-1992. e1914. DOI : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4628567/pdf/nihms726482.pdf https://doi.org/10.1016/j.apmr.2015.07.005
  13. Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and health utilities index. Stroke, 35(2), 607-612. DOI : https://www.ahajournals.org/doi/pdf/10. 1161/01.STR.0000110984.91157.BD?download=true https://doi.org/10.1161/01.STR.0000110984.91157.BD?download=true
  14. Todorov, A., & Kirchner, C. (2000). Bias in proxies' reports of disability: data from the national health interview survey on disability. American Journal of Public Health, 90(8), 1248. DOI : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1446336/pdf/10937005.pdf 10937005.pdf
  15. KIHASA. (2022). National survey of the disabled 2020. Korea Institute for Health and Social Affairs (Online). Retrieved from https://data.kihasa.re.kr/kihasa/kor/databank/DatabankDetail.html?dtb_id=10088&code_id=DTB_01_02_06&type=TOPIC
  16. KIHASA. (2020). National survey of the disabled 2020. Sejong : MOHW. Retrieved from http://www.mohw.go.kr/upload/viewer/skin/doc.html?fn=1646182288560_20220302095129.pdf&rs=/up-load/viewer/result/202208/
  17. KDCA. (2022). Korea health statistics 2020: Korea national health and nutrition examination survey (KNHANES VIII-2). Cheongju: KDCA. Retrieved from https://knhanes.kdca.go.kr/knhanes/sub04/sub04_04_01.do
  18. S. A. Kim, Y. Seo, K.S. Woo, & Y. J. Shin (2019). A systematic review of studies on current status and influencing factors of unmet medical needs in Korea. J. Crit. Soc. Welf, 62, 53-92. DOI : https://doi.org/10.47042/ACSW.2019.02.62.53
  19. Dickson, S., Barbour, R. S., Brady, M., Clark, A. M., & Paton, G. (2008). Patients' experiences of disruptions associated with post-stroke dysarthria. International Journal of Language & Communication Disorders, 43(2), 135-153. DOI : https://doi.org/10.1080/13682820701862228
  20. K. Kim. (2021). Communication support systems Focused on adults with cerebral lesions. Journal of Special Education 37(2), 1-29. DOI: https://doi.org/10.31863/JSE.2021.05.37.2.1
  21. Andresen, E. M., Vahle, V. J., & Lollar, D. (2001). Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Quality of Life Research, 10(7), 609-619. DOI : https://link.springer.com/content/pdf/10.1023/A:1013187903591.pdf
  22. Zinkevich, A., Lubasch, J. S., Uthoff, S. A. K., Boenisch, J., Sachse, S. K., Bernasconi, T., & Ansmann, L. (2021). Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study. BMJ open, 11(8), e048789. DOI : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8372882/pdf/bmjopen-2021-048789.pdf
  23. Howland, M., Allan, K. C., Carlton, C. E., Tatsuoka, C., Smyth, K. A., & Sajatovic, M. (2017). Patient-rated versus proxy-rated cognitive and functional measures in older adults. Patient Related Outcome Measures, 8, 33. DOI : https://www.dovepress.com/getfile.php?fileID=35489