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NTIS 바로가기CHNR : Child health nursing research, v.21 no.4, 2015년, pp.331 - 338
이애란 (원광보건대학교 간호학과) , 홍선우 (대전대학교 응급구조학과)
Purpose: This study was done to identify differences in the life transition process of parents caring for children with autism according to parents' socio-demographic characteristics. Methods: Participants were 194 parents caring for children with autism. Data were collected from December 2013 to Fe...
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핵심어 | 질문 | 논문에서 추출한 답변 |
---|---|---|
우리나라에서 자폐성 장애로 등록되어있는 인구는? | 우리나라에서 자폐성 장애로 등록되어 있는 장애인은 2014년 12월 기준 19,524명으로 남자 16,629명(85.2%), 여자 2,895명(14.8%)인데 이는 전체 등록 장애인 수 2,519,241명의 0.78%에 해당된다[1]. | |
자폐성 장애인의 수가 더 많을 것으로 추정하는 이유는? | 78%에 해당된다[1]. 그러나 자폐성 장애는 2007년 4월 11일 장애인복지법시행령에 의해서 장애 범주에 포함되었기 때문에 그 이전에는 자폐성 장애를 가지고 있었음에도 불구하고 지적장애 또는 언어장애로 등록되어 있는 상태이며, 아동이 어린 경우 부모들이 조금 더 지켜보자는 마음으로 병원을 방문하여 진단받는 일을 차일피일 미루거나 진단을 받은 후에도 자녀의 장애를 인정하지 않는 경향이 있기 때문에[2] 실제로는 훨씬 더 많은 자폐성 장애인이 있을 것으로 예상된다. 2014년 12월 기준으로 등록된 자폐성 장애의 연령별 분포는 0-5세 3. | |
자폐성 장애를 가진 자녀를 양육하고 있는 부모가 겪게 되는 부정적 영향은? | 이러한 증상으로 인하여 자폐성 장애를 가진 자녀를 양육하고 있는 부모는 지적장애, 뇌병변장애, 언어 또는 청각장애 등 다른 종류의 장애 자녀를 둔 부모에 비하여 심각한 스트레스와 우울, 불안을 경험하는 것으로 보고되고 있다[5-7]. 자녀의 자폐성 장애로 인하여 부모는 충격과 함께 불공평함, 상실감, 슬픔, 실망, 죄책감 등의 정서적 혼란 상태에 빠지게 되며, 자존감이 낮아지고 결혼생활이나 경제적 문제, 부정적 시선으로 인한 고통을 겪는다[8]. 이런 상황에서 부모는 의료진과 원활한 의사소통이 이루어지지 않고, 자녀에 대한 부정적인 평가를 내리는 등 부적응 상태가 발생할 수 있으며[9], 장애를 가진 자녀의 건강을 유지하기 위한 돌봄 행위를 소홀히 하거나[10], 태만 또는 학대의 위험이 있을 수 있다[11]. |
Statistics Korea. 2014 registered disabled persons data [Internet]. Daejeon: Statistics Korea; 2015 [cited 2015 August 1]. Available from: http://www.index.go.kr/potal/main/EachDtlPageDetail.do?idx_cd2768.
Hall HR, Graff JC. Maladaptive behaviors of children with autism: Parent support, stress, and coping. Issues in Comprehensive Pediatric Nursing. 2012;35(34):194-214. http://dx.doi.org/10.3109/01460862.2012.734210
Solomon AH, Chung B. Understanding autism: How family therapists can support parents of children with autism spectrum disorders. Family Process. 2012;51(2):250-264.
Browska DA, Pisula E. Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research. 2010;54(3):266-280. http://dx.doi.org/10.1111/j.1365-2788.2010.01258.x
Chamax B, Bonniau B, Oudaya L, Ehrenberg A. The autism diagnostic experiences of French parents. Autism. 2011;15(1):83-97. http://dx.doi.org/10.1177/1362361309354756
Hayes SA, Watson SL. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism Development Disorder. 2013;43(3):629-642. http://dx.doi.org/10.1007/s10803-012-1604-y
Higgins DJ, Bailey SR, Pearce JC. Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism. 2005;9(2):125-137. http://dx.doi.org/10.1177/1362361305051403
Hankins JS. Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues in Comprehensive Pediatric Nursing. 2012;35(1):24-44. http://dx.doi.org/10.3109/01460862.2012.646479
Lee AR, Kim JS. Mother's perception about the health state of disabled children and caring behaviors for their children. Journal of the Korean Society of Maternal and Child Health. 2009:13(1):24-37.
Govindshenoy M, Spencer N. Abuse of the disabled child: A systematic review of population-based studies. Child: Care, Health and development. 2006;33(5):552-558. http://dx.doi.org/10.1111/j.1365-2214.2006.00693.x
Wei X, Yu JW. The concurrent and longitudinal effects of children disability types and health on family experiences. Maternal Child Health Journal. 2012;16(1):100-108. http://dx.doi.org/10.1007/s10995-010-0711-7
Gray DW. Coping over time: The parents of children with autism. Journal of Intellectual Disability Research. 2006;50(12):970-976. http://dx.doi.org/10.1111/j.1365-2788.2006.00933.x
Altiere MJ, Kluge S. Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability. 2009;34(2):142-152. http://dx.doi.org/10.1080/13668250902845202
Meleis AI, Sawyer LM, Im EO, Messias DKF, Schumacher. Experiencing transitions: An emerging middle-range theory. Advanced Nursing Science. 2000;23(1);12-28.
Hughes C, Carter EW. Transition supports: Equipping youth for adult life. Journal of Vocational Rehabilitation. 2011;35(3):177-180. http://dx.doi.org/10.3233/JVR-2011-0567
Nelson AM. A Metasynthesis: Mothering other-than-normal children. Qualitative Health Research. 2002;12(4):515-530. http://dx.doi.org/10.1177/104973202129120043
Wong MG, Heriot SA. Vicarious futurity in autism and childhood dementia. Journal of Autism Development Disorder. 2007;37(10):1833-1841. http://dx.doi.org/10.1007/s10803-006-0317-5
Lassetter JH, Mandleco BL, Roper SO. Family photographs: Expressions of parents raising children with disabilities. Qualitative Health Research. 2007;17(4):456-467. http://dx.doi.org/10.1177/1049732306298804
Dale E, Jahoda A, Knott F. Mothers' attributions following their child's diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression and expectations about their child's future. Autism. 2006;10(5):463-479. http://dx.doi.org/10.1177/1362361306066600
Yildirim A, Hacihasanoglu A, Karakurt P. Effects of a nursing intervention program on the depression and perception of family functioning of mothers with intellectually disabled children. Journal of Clinical Nursing. 2012;22(1-2):251-261. http://dx.doi.org/10.1111/j.1365-2702.2012.04280.x
Humphrey N, Lewis S. Make me normal: The views and experiences of pupils on the autistic spectrum in mainstream secondary schools. Autism. 2008;12(1):23-46. http://dx.doi.org/10.1177/1362361307085267
Hare DJ, Pratt C, Burton M, Bromley J, Emerson E. The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism. 2004;8(4):425-444. http://dx.doi.org/10.1177/1362361304047225
Koenig K. Shana Nichols, Gina Marie Moravcik, Samara Pulver Tetenbaum: Girls growing up on the autism spectrum: what parents and professionals should know about the pre-teen and teenage years. Journal of Autism Development Disorder. 2010;40(8):1042-1043. http://dx.doi.org/10.1007/s10803-009-0856-7
Jones L, Totsika V, Hastings RP, Petalas MA. Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach. Journal of Autism Development Disorder. 2013;43(9):2090-2098. http://dx.doi.org/10.1007/s10803-012-1756-9
Kheir N, Ghoneim O, Sandridge AL, Al-Ismail M, Hayder S, Al-Rawi F. Quality of life of caregivers of children with autism in Qatar. Autism. 2012;16(3):293-298. http://dx.doi.org/10.1177/1362361311433648
Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism Development Disorder. 2008;38(7):1278-1291. http://dx.doi.org/10.1007/s10803-007-0512-z
Donaldson SO, Elder JH, Self EH, Christie MB. Fathers' perceptions of their roles during in-home training for children with autism. Journal of Child and Adolescent Psychiatric Nursing. 2011;24(4):200-207. http://dx.doi.org/10.1111/j.1744-6171.2011.00300.x
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