뒤셴 근이영양증 아동과 부모의 장애수용에 관한 연구
A Study on Acceptance of Disability for a Child with Duchenne Muscular Dystrophy and His Parents
1
조회
0
다운로드
3
인용
0
참고문헌
키워드
초록
연구목적: 본 연구의 목적은 성공적으로 장애수용을 마친 뒤셴 근이영양증(DMD) 아동과 부모의 장애수용 특성을 가족관계 안에서 검토하는 것이었다. 연구방법: 연구 참여자는 한국 대도시에 거주하고 있는 DMD 아동 JAKE와 어머니, 아버지로 구성된 3인 가족이었고, 조사는 개별 반구조화 면접을 통해 이루어졌다. 연구결과: 첫째, 참여자들의 행복은 JAKE의 DMD 진단을 계기로 크게 낮아졌으나, JAKE가 휠체어를 타기 시작한 이후 서서히 높아지고 있다. 둘째, 참여자들의 장애수용은 서로 유의미한 영향을 미치는 것으로 나타났고, 특히 부모는 JAKE의 장애수용 과정으로부터 큰 영향을 받고 있음을 확인할 수 있었다. 셋째, 참여자들의 장애수용에 유의미한 영향을 미친 공통요인은 JAKE의 DMD 진단, DMD 통보(특수학교 전학), JAKE의 휠체어 이용 시작 등 충격과 수용 단계에 해당하는 사건들이었다. 결론: DMD 아동과 가족의 장애수용을 촉진하기 위한 지원 내용이나 방법을 검토할 때는 가족 전체 장애수용의 중요성, 가족 전체 장애수용에 영향을 미치는 공통요인, 가족 구성원 사이의 상호관계를 고려해야 할 것이다.
Abstract
Purpose: The purpose of this study was to investigate the characteristics of disability acceptance of one family who accepted a child’s Duchenne muscular dystrophy (DMD) successfully based on family relationships. Method: Individual semi-structured interviews were conducted with a family of three, JAKE with DMD, his mother and father living in a big city in South Korea. Results: The results were as follows: 1) The happiness levels of all participants began to decrease rapidly when JAKE was diagnosed as DMD and began to increase rapidly when JAKE started using a wheelchair. 2) Participants affected each other in their disability acceptance. Especially, parents were heavily influenced by JAKE’s disability acceptance process. 3) The common factors affecting their disability acceptance were events related to the “shock” and “acceptance” stages, such as DMD diagnosis of JAKE, DMD notice to JAKE (transferring to a special school) and starting wheelchair use. Conclusion: In order to create effective support and services for children with DMD and their families, it is necessary to focus on the importance of the entire family’s disability acceptance, common factors affecting the entire family’s disability acceptance, and strong relationships among family members.
참고문헌 (33)
- Abi Daoud, M., "Depression in parents of children with Duchenne muscular dystrophy", Paediatric Neurology, 31(1), pp.16~19 (2004)
- Banihani, R., "Cognitive and neurobehavioral profile in boys with Duchenne muscular dystrophy", Journal of Child Neurology, 30(11), pp.1472~1482 (2015)
- Blacher, J., "Sequential stages of parental adjustment to the birth of a child with handicaps : Fact or artifact", Mental Retardation, 22(2), pp.55~68 (1984)
- Bowes, S., "Chronic sorrow in parents of children with type 1 diabetes", Journal of Advanced Nursing, 65(5), pp.992~1000 (2009)
- Chen, J. Y., "A comparison of the stress and coping strategies between the parents of children with Duchenne muscular dystrophy and children with a fever", Journal of Pediatric Nursing, 17(5), pp.369~379 (2002)
- Chen, J. Y., "Family function in families of children with Duchenne muscular dystrophy", Family & Community Health, 30(4), pp.296~304 (2007)
- 최복천, "성인기 장애인의 형제자매가 인식하는형제관계 및 그 의미", 지체.중복.건강장애연구, 61(2), pp.159~183 (2018), 한국지체·중복·건강장애교육학회[DOI]
- Colvin, M. K., "Psychosocial management of the patient with Duchenne muscular dystrophy", Pediatrics, 142(2), pp.99~109 (2018)
- Coughlin, M. B., "Chronic sorrow in parents of children with a chronic illness or disability : An integrative literature review", Journal of Pediatric Nursing, 37, pp.108~116 (2017)
- Emery, A. E., "Population frequencies of inherited neuromuscular diseases–a world survey", Neuromuscular Disorder, 1, pp.19~29 (1991)
- Fee, R. J., "Resilience in children diagnosed with achronic neuromuscular disorder", Journal of Developmental & Behavioral Pediatrics, 32(9), pp.644~650 (2011)
- Gocheva, V., "Psychosocial adjustment and parental stress in Duchenne muscular dystrophy", European Journal of Paediatric Neurology, 23(6), pp.832~841 (2019)
- Gordon, J., "An evidence-based approach for supporting parents experiencing chronic sorrow", Pediatric Nursing, 35(2), pp.115~119 (2009)
- Gravelle, A. M., "Caring for a child with a progressive illness during the complex chronic phase : Parents’ experience of facing adversity", Journal of Advanced Nursing, 25, pp.738~745 (1997)
- Hendriksen, J. G., "Psychosocial adjustment in males with Duchenne muscular dystrophy : Psychometric properties and clinical utility of a parent-report questionnaire", Journal of Pediatric Psychology, 34(1), pp.69~78 (2009)
- Hewetson, R., "The lived experience of mothers of children with chronic feeding and", or swallowing difficulties, 2009, pp.24(3), 322~332
- Kearns, C., "An exploration of the coping strategies and environmental supports used by parents of boys with Duchenne muscular dystrophy", The Irish Journal of Occupational Therapy, 43, pp.9~16 (2015)
- Kenneson, A., "The effect of caregiving on women in families with Duchenne", Becker muscular dystrophy, 2010, pp.18(5), 520~528
- 김보경, "근육장애인의 삶의 경험에 관한 질적 사례연구 - 선천성 근이영양증을 중심으로 -", 지체.중복.건강장애연구, 62(3), pp.197~220 (2019), 한국지체·중복·건강장애교육학회[DOI]
- 김정연, "근이영양증 자녀를 둔 어머니의 어려움과 지원요구에 대한 질적 연구", 지체.중복.건강장애연구, 54(1), pp.1~20 (2011), 한국지체·중복·건강장애교육학회[DOI]
- 김영미, "지체장애인의 자기존중감과 장애수용 간의 교호적 관계", 지체.중복.건강장애연구, 62(1), pp.101~118 (2019), 한국지체·중복·건강장애교육학회[DOI]
- Landfeldt, E., "Quantifying the burden of caregiving in Duchenne muscular dystrophy", Journal of Neurology, 263(5), pp.906~915 (2016)
- Livneh, H., "Psychosocial adaptation to chronic illness and disability : A primer for counselors", Journal of Counseling and Development, 83(1), pp.12~20 (2005)
- Nereo, N. E., "Parental stress in mothers of boys with Duchenne muscular dystrophy", Journal of Pediatric Psychology, 28(7), pp.473~484 (2003)
- Nereo, N. E., "Three wishes and psychological functioning in boys with Duchenne muscular dystrophy", Developmental and Behavioral Pediatrics, 24(2), pp.96~103 (2003)
- Olshansky, S., "Chronic sorrow : A response to having a mentally defective child", Social Casework, 43(4), pp.190~193 (1962)
- Polakoff, R. J., "The psychosocial and cognitive impact of Duchenne’s muscular dystrophy", Seminars in Pediatric Neurology, 5(2), pp.116~123 (1998)
- Poysky, J., "Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy : April 24-25, 2008, Miami, Florida", Neuromuscular Disorders, 19(10), pp.733~738 (2009)
- Reid, D. T., "Relating familial stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy", International Journal of Rehabilitation Research, 24(2), pp.83~93 (2001)
- Tomiak, E., "Gender specific differences in the psychosocial adjustment of parents of a child with Duchenne Muscular Dystrophy(DMD) : Tow points of view for a shared experience", Qualitative Research Journal, 7(2), pp.2~21 (2007)
- Webb, C. L., "Parents’ perspectives on coping with Duchenne muscular dystrophy", Child : Care, Health and Development, 31(4), pp.385~396 (2005)
- Weller, D. J., "Emotional reactions of patient, family, and staffin acute-care period of spinal cord injury : Part 1", Social Work in Health Care, 2(4), pp.369~377 (1977)
- Wikler, L., "Chronic sorrow revisited : Parents vs professional depiction of the adjustment of parents of mentally retarded children", American Journal of Orthopsychiatry, 51(1), pp.63~70 (1981)