Korean Society of Leisure, Recreation & Park

Journal Archive

Korean Journal of Leisure, Recreation & Park - Vol. 47 , No. 4

[ Article ]
Korean Journal of Leisure, Recreation & Park - Vol. 47, No. 4, pp. 13-27
Abbreviation: KSLRP
ISSN: 1598-0413 (Print)
Print publication date 31 Dec 2023
Received 02 Nov 2023 Revised 21 Dec 2023 Accepted 26 Dec 2023
DOI: https://doi.org/10.26446/kjlrp.2023.12.47.4.13

뇌성마비 장애아동 부모의 여가 참여와 삶의 의미
이록빛1 ; 김매이2
1연세대학교 강사
2고려대학교 교수

Leisure engagement and meaning of life among caregivers of children with cerebral palsy
Lee, Rokbit1 ; Kim, May2
1Yonsei University
2Korea University
Correspondence to : May, Kim E-mail: kimmay@korea.ac.kr

Funding Information ▼

Abstract

This case study explored the experience of engaging in leisure and meaning of life among caregivers of children with cerebral palsy. We used semi-structured in-depth interviews. We recruited 15 caregivers (2 males and 13 females) who are caring for children with cerebral palsy and whose ages were over 40 (mean age =44). Analysis of the data revealed three main themes; (1) self-actualization (time for discovering myself, an experience of growth and learning), (2) forming close relationships (understanding between members, emotional relationship with friends), (3) maintaining health (improvement of physical health, stress relief). The results demonstrated that caregivers were experiencing positive emotions in their daily lives. When the caregivers were participating in leisure activities, they were feeling happiness, and psychological stress was reduced. The findings are meaningful in that engaging in leisure activities had a pivotal role in improving the quality of life of caregivers.


Keywords: leisure engagement, meaning of life, caregivers, children with cerebral palsy
키워드: 뇌성마비 장애아동 부모, 여가 참여, 삶의 의미, 사례연구

Acknowledgments

이 논문은 2023년 대한민국 교육부와 한국연구재단의 일반공동연구지원사업의 지원을 받아 수행된 연구임(NRF-2020S1A5A2A03042018)


References
1. 강태진, 하숙례 (2017). 중학생의 스포츠 활동이 학업스트레스 및 운동 몰입에 미치는 영향. 한국스포츠학회, 15(4), 115-127.
2. 고동우 (2020). 여가학의 이해. 세림출판사.
3. 권영민 (2019). 여가의 장으로서의 학교의 의미 재조명: 듀이의 자아개념을 중심으로. 교육문화연구, 25(1), 255-272.
4. 김기순, 조성제(2016). 장애아동 부모의 여가활동 참여 정도 및 만족도가 자아존중감에 미치는 영향. 인문사회과학기술융합학회, 6(3), 169-177.
5. 김덕주, 용미현(2017). 장애아동을 양육하는 부모의 여가현황 및 여가만족에 관한 연구. 열린부모교육연구, 9(2), 71-86.
6. 김수현, 강현숙(2010). 뇌성마비 아동 어머니의 양육스트레스 영향요인. 재활간호학회지, 13(2), 123-131.
7. 김재익(2021). 뇌성마비인 현실적 어려움과 서비스 체계 강화 방안. 에이블뉴스. 2021.10.21. https://www.ablenews.co.kr/news/articleView.html?idxno=95873
8. 김지연(2010). 장애아동부모의 가족여가활동과 양육스트레스. 미발행석사학위논문. 강원대학교.
9. 김진섭. (1997). 현대여가의이해. 大旺社.
10. 김채현(2019). 장애의 종류 15가지. 장애인복지뉴스 (2019. 11. 29). https://www.dwbnews.kr/news/articleView.html?idxno=694
11. 김현지(2023). 한국장애인개발원 2023 장애통계연보. https://www.koddi.or.kr/data/research01_view.jsp?brdNum=7418821
12. 남승미 (2019). 중년기의 여가활동이 심리적 안녕감에 미치는 영향연구-자아탄력성과 여가만족도의 매개효과를 중심으로-, 미간행박사학위논문, 영남대학교.
13. 박세혁(2020). 행복을 탐구하는 여가 및 레크리에이션 플러스. 서울: 대한미디어.
14. 박수정(2004). 여가학개론. 인하대학교 출판부.
15. 석재은 (1992). 장애아동 부모교육 프로그램 내용 구성을 위한 부모들의 욕구 조사. 미간행 석사학위논문, 이화여자대학교.
16. 손유니 (2001). 능력강화를 위한 가족지원프로그램이 장애아동 부모의 스트레스와 자기효능감과 대처능력에 미치는 효과 - 정신지체학교 초등부 학부모를 중심으로-. 미간행석사학위논문, 이화여자대학교 대학원.
17. 신희란(2017). 홈트레이닝 활성화를 위한 브랜딩 전략 및 플랫폼 개발에 관한 연구. 미간행 석사학위논문, 홍익대학교.
18. 심연웅 (1995). 뇌성마비아동 어머니의 스트레스 비교 분석과 대처방안. 한국지체부자유아교육학회, 25(0), 67-87.
19. 어용숙, & 안혜경. (2007). 뇌성마비아동의 부모를 위한 가족지원 프로그램의 효과. 지체. 중복. 건강장애연구, 49, 99-110.
20. 오상훈, 임화순, 고미영(2014). 현대여가론. 백산출판사.
21. 윤소영 (2006). “2006 국민여가조사”결과. 2006 국민여가조사 심포지엄 자료집, 한국문화관광정책연구원.
22. 이경호 & 강정화. (2008). 장애아동부모의 여가활동이 삶의 질에 미치는 영향에 관한 연구. 교사교육연구, 47(3), 119-135.
23. 이록빛, 임영신, 정미송, 허진무, 김매이 (2021). 장애아동 보호자의 가족여가 참여와 회복탄력성. 한국여가레크리에이션학회, 42(1), 1-10.
24. 이미자 (1991). 뇌성마비 아동부모의 스트레스 연구, 미간행석사학위논문, 중앙대학교.
25. 이종경, 이은주. (2010). 노인의 여가스포츠 활동참가와 스트레스 및 자살생각 감소의 관계. 한국여가레크리에이션학회지, 34(3), 17-26.
26. 전다운 (2017). 임산부 아스피린 복용, 태아 뇌성마비 위험 30~50% 높여, 공감신문, 2017.11.27. https://www.gokorea.kr/news/articleView.html?idxno=32509
27. 하영란, 신혜용, 신정순 (1998). 미네소타 다면적 인성검사에 나타난 뇌성마비 아동어머니의 성격특성에 관한 연구. 최신의학, 33, 35-41.
28. 하제현, 김준. (2014). 여가스포츠 참가자의 참가정도에 따른 진지한 여가, 행복감, 생활 만족도 차이. 한국사회체육학회지, 57(1), 565-577.
29. 한국장애인개발원 (2013). 중증뇌병변 장애아동 및 가족 지원방안 연구, 서울: 한국장애인개발원.
30. 황지연(2014). 중증뇌병변장애아 부모, 돌봄 부담에‘허덕’. 에이블뉴스(2014. 01.23). https://www.ablenews.co.kr/news/articleView.html?idxno=49555
31. Ahmadizadeh, Z., Rassafiani, M., Khalili, M. A., & Mirmohammadkhani, M. (2015). Factors associated with quality of life in mothers of children with cerebral palsy in Iran. Hong Kong Journal of Occupational Therapy, 25, 15-22.
32. Byrne, M. B., Hurley, D. A., Daly, L., & Cunningham, C. G. (2010). Health status of caregivers of children with cerebral palsy. Child: care, health and development, 36(5), 696-702.
33. Chiluba, B. C., & Moyo, G. (2017). Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia. BMC Research Notes, 10, 1-8.
34. Coleman, D., & Iso-Ahola, S. E. (1993). Leisure and health: The role of social support and self-determination. Journal of leisure research, 25(2), 111-128.
35. Crowe, T. K. (1993). Time use of mothers with young children: The impact of a child’s disability. Developmental Medicine and Child Neurology, 35, 621-630.
36. Crowe, T. K., & Florez, S. I. (2006). Time use of mothers of schoolꠓaged children: A continuing impact of a child’s disability. American Journal of Occupational Therapy, 60, 194-203.
37. Dlamini, M. D., Chang, Y. J., & Nguyen, T. T. B. (2023). Caregivers' experiences of having a child with cerebral palsy. A meta-synthesis. Journal of Pediatric Nursing, 73, 157-168.
38. Dumazedier, T.(1976). Toward a Society of Leisure. New York: The Free Press.
39. Glesne, C. (2016). Becoming qualitative researchers: An introduction. Pearson. One Lake Street, Upper Saddle River, New Jersey 07458.
40. Hill, R. D., Storandt, & Malley, M. (1993). The impact of long-term exercise training on psychological function in older adults. Journals of Gerontology, 48, 12-17.
41. Hodge, C. J., Duerden, M. D., Layland, E. K., Lacanienta, A., Goates, M. C., & Niu, X. M. (2017). The association between family leisure and family quality of life: A meta‐analysis of data from parents and adolescents. Journal of Family Theory & Review, 9(3), 328-346.
42. Johnson, C. B., & Dietz, J. C. (1985). Time use of mothers with preꠓschool children: A pilot study. American Journal of Occupational Therapy, 39, 578-583.
43. Karnes, S., Niemeier, B., Ksobiech, K., & Fischer, E. (2018). A PROFILE OF STRESS, HEALTH, AND WORK PERFORMANCE AMONG UNIVERSITY EMPLOYEES. American Journal of Health Studies, 33(3).
44. Kuhaneck, H. M., Burroughs, T., Wright, J., Lemanczyk, T., & Darragh, A. R. (2010). A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical & occupational therapy in pediatrics, 30(4), 340-350.
45. Lawton, M. P. (1983). Environment and other determinants of weil-being in older people. The gerontologist, 23(4), 349-357.
46. Loesch, L. C. (1981). Leisure counseling with youth. The Counseling Psychologist, 9(3), 55-67.
47. Mannell, R. C., & Kleiber, D. A. (1997). A social psychology of leisure. Venture Publishing Inc..
48. McGuire, B. K., Crowe, T. K., Law, M., & VanLeit, B. (2004). Mothers of children with disabilities: Occupational concerns and solutions. OTJR: Occupation, Participation, and Health, 24, 54-63.
49. McCubbin, H., Cauble, A. E., & Patterson, J. M. (1982). Family stress, coping, and social support. Springfield, IL: Thomas.
50. Mobarak, R., Khan, N. Z., Munir, S., Zaman, S. S., & McConachie, H. (2000). Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of pediatric psychology, 25(6), 427-433.
51. Murphy, J. F. (1981). Concepts of leisure (No. Ed. 2). Prentice-Hall Inc..
52. Okurowska-Zawada, B., Kułak, W., Wojtkowski, J., Sienkiewicz, D., & Paszko-Patej, G. (2011). Quality of life of parents of children with cerebral palsy. Prog Health Sci, 1(1), 116-123.
53. Parham, L. D., & Fazio, L. S. (2008). Play in occupational therapy for children. (No Title).
54. Pousada, M., Guillamón, N., Hernández-Encuentra, E., Muñoz, E., Redolar, D., Boixadós, M., & Gómez-Zúñiga, B. (2013). Impact of caring for a child with cerebral palsy on the quality of life of parents: a systematic review of the literature. Journal of Developmental and Physical Disabilities, 25, 545-577.
55. Rizk, S., Pizur-Barnekow, K., & Darragh, A. R. (2011). Leisure and social participation and health-related quality of life in caregivers of children with autism. OTJR: Occupation, Participation and Health, 31(4), 164-171.
56. Sardana, R., Singh, U., & Sumalatha, K. B. (2016). Family life of caregivers: A descriptive study of disruption of family activities, leisures and interaction of caregivers of children with cerebral palsy. Al Ameen Journal of Medical Sciences, 9(3), 154-161.
57. Smith, M., & Blamires, J. (2022). Mothers' experience of having a child with cerebral palsy. A systematic review. Journal of Pediatric Nursing, 64, 64-73.
58. Spradley, J. P. (1979). Ethnography and culture. The ethnographic interview, 3-16.
59. Stebbins, R. A.(2018). Social world and the leisure experience. Bingley, UK: Emerald Group Limited.
60. Stake, R. E. (1995). The art of case study research. sage.
61. Wanamaker, C. E., & Glenwick, D. S. (1998). Stress, coping, and perceptions of child behavior in parents of preschoolers with cerebral palsy. Rehabilitation Psychology, 43(4), 297.
62. Wenzel, K., Townsend, J., Hawkins, B. L., & Russell, B. (2020). Changes in family leisure functioning following a family camp for children with autism spectrum disorder (ASD). Therapeutic Recreation Journal, 54(1), 17-31.
63. Wylson, L. A.(1980). Design for Leisure Entertainment. Boston: Butter Worth Inc.
64. Ying, K., Rostenberghe, H. V., Kuan, G., Mohd Yusoff, M. H. A., Ali, S. H., & Yaacob, N. S. (2021). Health-related quality of life and family functioning of primary caregivers of children with cerebral palsy in Malaysia. International Journal of Environmental Research and Public Health, 18(5), 2351.