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http://dx.doi.org/10.5392/JKCA.2017.17.09.498

Conceptualizing Caregiving Supports for Families Who Have Children with Disabilities: A Concept Mapping Application  

Kim, Yu-Ri (이화여자대학교 특수교육과)
Choi, Bogcheon (전주대학교 재활학과)
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Abstract
Caregiving supports have been provided to decrease caregiving burdens of families of children with disabilities, but there are needs for improving caregiving services. The purpose of this study was to conceptualize content items and domains of caregiving supports from the perspectives of parents and service providers in order to help families of children with disabilities to decrease their caregiving burdens. This study used concept mapping that was useful for service-needs identification and program development. First, focus group interviews with two parent groups and one service provider group were conducted to generate a total of 31 items. Also, they sorted the items in terms of conceptual similarity and rated the items in terms of their needs. Next, the sorting data were analyzed using multidimensional scaling and cluster analysis and the rating data were calculated for mean. The results provided 31 content items in four domains: regular caregiving, activity-based caregiving, parent empowerment for caregving, and strengthening family relationships. All the domains were rated as important to decrease caregiving burdens. This study has practical implications for improving caregiving services and the related policies.
Keywords
Caregiving Supports; Children with Disabilities; Family Supports; Respite Care; Concept Mapping;
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1 A. Kayftizal, M. Gragg, and R. Orr, "Positive experiences of mothers and fathers of children who have disabilities," Mental Retardation, Vol.23, No.4, pp.337-343, 2010.
2 Y. Chung, S. Lee, and B. Chung, "Attitudes and determinants of the risk pattern types of children with developmental disabilities," Developmental Disabilities Bulletin, Vol.30, No.2, pp.199-220, 2003.
3 배은경, 정서행동장애 아동 가족의 일반적 특성과 가족지원욕구에 관한 연구, 이화여자대학교, 석사학위논문, 2006.
4 오혜경, 전혜연, "장애아동 부양가족의 양육부담 및 가족지원 욕구," 한국가족복지학, 제9권, 제1호, pp.79-100, 2004.
5 K. Scorgie and D. Sobsey, "Transformational outcomes associated with parenting children who have disabilities," Mental Retardation, Vol.38, No.3, pp.195-206, 2000.   DOI
6 A. Turnbull and R. Turnbull, Families, professionals, and exceptionality: Collaborating for empowerment, Merrill, 2011.
7 오혜경, 백은령, 한민우, 지적장애인 가족지원 방안에 관한 연구보고서, 한국지적장애인복지협회, 2007.
8 유영준, 이명희, 백은령, 최복천, "장애아동.청소년 가족의 양육부담 및 가족지원 욕구에 관한 연구," 특수교육, 제10권, 제1호, pp.209-234, 2011.
9 유영준, 백은령, "가족중심실천이 장애아 가족의 양육부담에 미치는 영향," 한국장애인복지학, 제22집, pp.207-225, 2013.
10 이지수, "장애아동 가족의 자녀 양육부담 및 서비스 욕구," 한국장애인복지학, 제8집, pp.71-100, 2008.
11 L. Woolfson and E. Grant, "Authoritative parenting and parental stress in parents of preschool and older children with developmental disabilities," Child Care Health Development, Vol.29, No.2, pp.144-177, 2006.
12 B. Wilkie and O. Barr, "The experiences of parents of children with an intellectual disability who use respite care services," Learning Disability Practice, Vol.11, No.5, pp.30-36, 2008.
13 T. Heller, J. Caldwell, and A. Factor, "Aging family caregivers: Policies and practices," Developmental Disabilities Research Reviews, Vol.13, No.2, pp.136-142, 2007.
14 J. Robertson, C. Hatton, E. Wells, M. Collins, S. Langer, V. Welch, and E. Emerson, "The impacts of short break provision on families with a disabled child: an international literature review," Health & Social Care in the Community, Vol.9, No.4, pp.337-371, 2011.
15 H. MacDonald and P. Callery, "Different meanings of respite: A study of parents, nurses and social workers caring for children with complex needs," Child Care, Health, and Development, Vol.30, No.3, pp.279-288, 2004.   DOI
16 B. Davies, R. Steele, B. J. Collins, K. Cook, and S. Smith, "The impact of families of respite care in a children's hospice program," Journal of Palliative Care, Vol.20, No.4, pp.277-286, 2004.
17 N. Eaton, "I don't know how we coped before: A study of respite care for children in home and hospice" Journal of Clinical Nursing, Vol.17, No.23, pp.3196-3204, 2008.   DOI
18 R. McConkey, F. Kelly, H. Mannan, and S. Craig, "Inequalities in respite service provision: Insights from a national, longitudinal study of people with intellectual disabilities," Journal of Applied Research in Intellectual Disabilities, Vol.13, No.1, pp.85-94, 2010.
19 김성희, 황주희, 이연희, 오미애, 이송희, 변경희, 이웅, 중증장애인 보호 종합대책 수립을 위한 정책 연구, 한국보건사회연구원, 2013.
20 최복천, 김유리, "장애아동 부모가 인식하는 활동지원서비스의 문제점 및 개선방안에 관한 질적 연구," 한국지체.중복.건강장애연구, 제59권, 제3호, pp.207-226, 2016.
21 오혜경, "영유아기 장애아동에 대한 조기개임에 있어 가족중심적 지원에 관한 고찰," 한국가족복지학, 제7권, 제1호, pp.39-60, 2002.
22 이승기, 김기룡, 백은령, 전혜연, 이계윤, 조윤경, 최복천, 최윤영, 장애아동에 대한 사회적 복지지원체계연구, 보건복지부, 2011.
23 최복천, 김유리, 김진우, 김치훈, 심석순, 양희택, 오다은, 장애아동에 대한 양육지원 및 활동지원사업의 통합적 운영방안 연구, 보건복지부, 2015.
24 이영미, "장애인가족지원 서비스 욕구조사: 대전광역시를 중심으로," 사회과학연구, 제23집, pp.35-65, 2014.
25 최지선, 이익섭, 김재형, "활동보조서비스를 이용하는 발달장애아동 부모의 양육부담감 영향요인에 관한 연구," 한국지역사회복지학, 제32집, pp.31-60, 2010.
26 J. B. Chan and J. Sigafoos, "A review of child and family characteristics related to the use of respite care in developmental disability services," Child & Youth Care Forum, Vol.29, No.1, pp.27-37, 2000.   DOI
27 W. M. Trochim, "An introduction to concept mapping for planning and evaluation," Evaluation and Program Planning, Vol.12, No.1, pp.1-16, 1989.   DOI
28 M. Kane and W. M. Trochim, Concept mapping for planning and evaluation, Sage, 2007.
29 K. Jackson and W. M. Trochim, "Concept mapping as an alternative approach for the analysis of open-eneded survey responses," Organizational Research Methods, Vol.5, No.4, pp.307-336, 2002.   DOI
30 Concept Systems Inc., The Concept system facilitator training seminar manual, Concept Systems Incorporated, 2015.
31 R. Bedi, "Concept mapping the client's perspective on counselling alliance formation," Journal of Counseling Psychology, Vol.53, No.1, pp.26-35, 2006.   DOI
32 S. Miller, "Respite care for children who have complex healthcare needs," Paediatric Nursing, Vol.14, No.5, pp.33-37, 2002.   DOI
33 R. Bedi and D. Alexander, "Using multivariate concept-mapping for examining client understanding of counseling," Canadian Journal of Counseling, Vol.43, No.2, pp.76-91, 2009.
34 김기룡, 강경숙, 이명희, "장애인 가족지원 서비스 이용 현황 및 만족도 조사," 특수교육, 제15권, 제4호, pp.205-229, 2016.
35 S. Rosas and M. Kane, "Quality and rigor of the concept mapping methodology: A pooled study analysis," Evaluation and Program Planning, Vol.35, No.2, pp.236-245, 2012.   DOI
36 B. Paulson, and R. Everall, "Suicidal adolescents: Helpful aspects of psychotherapy," Archives of Suicide Research, Vol.7, No.4, pp.309-321, 2003.   DOI
37 김기룡, 이명희, "모듈식 부모교육 프로그램이 장애유아 부모의 양육핵심역량에 미치는 효과," 유아특수교육연구, 제13권, 제1호, pp.73-95, 2013.
38 S. Neufeld, B. Query, and J. E. Drummond, "Respite care users who have children with chronic conditions: Are they getting a break?," Journal of Pediatric Nursing, Vol.16, No.4, pp.234-244, 2001.   DOI
39 이채식, "장애인 활동보조인의 활동보조서비스 제공 실태 분석," GRI 연구논총, 제13권, 제1호, pp.123-144, 2011.
40 최복천, 임수경, 유영준, "장애아동의 긍정적 기여가 부모의 양육부담에 미치는 영향에 관한 연구," 재활복지, 제18권, 제3호, pp.73-93, 2014.
41 J. Blacher and B. Baker, "Positive impact of intellectual disabilities on families," American Journal of Mental Retardation, Vol.112, No.5, pp.330-338, 2007.   DOI