성인 지적장애인을 부양하는 비장애 손위 여자형제들의 부양경험에 관한 연구 = Experience of Older Sisters without disability as Caregivers of Adult with Intellectual Disability

다국어 초록 (Multilingual Abstract)

The main purpose of this present study is to examine essence of caregiving experience of older sisters of adult with intellectual disability. For this purpose, researcher selected six participants by purposive sampling method. In-depth interview was conducted to collect the data. Data were collected between June 2008 and December 2009. This study used Colaizzi`s phenomenological research methodology. This study deducted total three categories, 11 theme clusters, and 30 themes, based on 112 fomulated meanings and 831 significant statements derived from participants` descriptions. Three categories include <My much burden> <Accepting my destiny with my younger brother> <Desire about unknown future>. The findings of the study suggest followings: first, preparation course of caregiving, meeting with caregiver and adult with intellectual disability need to be performed in order to decrease difficulties of caregivers, second, role as educator and counselor, support course of caregiving for family of caregiver, and diversification of services for aging adult with intellectual disability required for reinforcement positive aspects of caregiving, finally, social welfare interruption (i.e., diverse type of residential facilities, support system of caregiveing) need to performed for preparation about future of caregiver and adult with intellectual disability.

참고문헌 (Reference)

1 김분한, "현상학적 연구방법의 비교고찰. 대한간호학회지" 29 (29): 1208-1219, 1999

2 통계청, "총 조사 인구 총괄"

3 신경림, "질적간호연구방법" 이화여자대학교 출판부 1997

4 박수정, "정신지체장애인의성인형제가경험하는문제와서비스욕구에관한연구" 숭실 대학교 2000

5 김명선, "정신지체자의 형제들이 갖게되는 사회적 심리적 갈등에 관한 연구" 숭실대학교 대학원 1987

6 안병숙, "정신지체인의형제자매욕구에관한연구" 단국대학교 2002

7 이동귀, "정신지체노인의특성과지원방안" 도서출판 특수교육 2004

8 김기희, "정신지체 형제자매에 대한 일반형제 자매의 이해와 태도" 대구대학교 1998

9 서미경, "정신장애인 가족의 대처에 관한 연구" 37 : 217-239, 1999

10 최선경, "재가 성인정신지체인 가족 부양부담 경감을 위한 사회사업실천 접근방안 고찰" 2 (2): 223-243, 2005

11 고인숙, "장애인의평생계획에관한연구" 이화여자대학교 2004

12 전혜인, "장애아의형제자매" 한울림스페셜 2009

13 이광자, "우리나라친족관계의지속과변화에관한연구: 도시중산층핵가족을중심으로" 연세대학교 1988

14 "엘리트 국어사전" YBM 2008

15 최선경, "성인정신지체인가족의부양부담과가족지원서비스연구" 서울여자대학교 2006

16 서미경, "성인정신장애인을 돌보는 부모에 관한 연구:정신질환자 부모와 정신지체인 부모의 비교" 대한신경정신의학회 40 (40): 443-451, 2001

17 김미혜, "성인 지적장애인에 대한 비장애형제의 부양 책임감에 영향을 미치는 요인 연구" 한국사회복지연구회 (37) : 63-89, 2008

18 최선경, "성인 정신지체인을 돌보는 어머니의 심리적 부담과 서비스 욕구" 한국지적장애교육학회 10 (10): 207-231, 2008

19 양숙미, "성인 정신지체인 가족의 능력고취를 위한 가족지원 프로그램에 관한 기초연구" 12 : 59-84, 1998

20 서미경, "성인 정신장애인의 평생계획에 관한 연구" 43 : 106-130, 2000

21 유태균, "사회복지질적연구방법론" 나남출판 2005

22 김승현, "사회과학방법론" 일신사 2003

23 "뉴에이스 국어사전" 금성출판사 2008

24 Griffiths, D. L, "Views about planing for the future among parents and siblings of adults with mental retardation" 43 : 221-227, 1994

25 Romanotto, C. D, "Understanding the well-being of older maternal caregivers of adult-aged children with developmental disabilities" New York University 2001

26 Sturmey, P, "The psychometric properties of the multi-dimensional observation scale for elderly subjects(MOSES) in middle aged and older populations of people with mental retardation" 2003 (2003): 131-134, 2003

27 Seligman, M, "Sources of psychological disturbance among siblings of handicapped children" 61 : 529-531, 1983

28 Seltzer, G. B, "Social supports and expectations of family involvement after out-of home placement, Adults with mental retardation and their aging mothers : Impacts of siblings" 40 : 310-317, 1991

29 Strohm, K, "Siblings : Brothers and sisters of children with special needs" 2002

30 Janicki, M. P, "Service needs among older developmentally disabled persons, in Aging and developmental disabilities : Issues and approaches" Brookes 289-304, 1985

31 Simronsson, R. J, "Review :　Research on handicapped children : Sibling relationships" 7 : 153-171, 1981

32 Morse, J. M, "Qualitative research methods for health professionals" 1995

33 Padgett, D. K, "Qualitative methods in social work research : Challenges and rewards" 1998

34 Colaizzi, P, "Psychological research as the phenomenologist views it, In Existential phenomenological alternatives for psychology" Oxford University Press 48-71, 1978

35 Smith, G. C, "Psychoeducational support groups for aging parents : Development and preliminary outcomes" 34 (34): 172-181, 1996

36 Thorpe, L. U, "Psychiatric disorders. In dementia, aging and intellectual disabilities : A handbook" Bruner/Mazel 217-231, 1998

37 Seltzer, M. M, "Predictors and outcomes of the end of co-resident caregiving in aging families of adults with mental retardation or mental illness" 46 : 13-22, 1997

38 Heller, T, "Permanency planning for adults with mental retardation living with family caregivers" 96 : 163-176, 1991

39 Heller, T, "Permanency planning among black and white family caregivers of older adults with mental retardation" 26 : 203-208, 1988

40 Kaufman, A. V, "Permanency Planning by Older Parents Who Care for Adult Children With Mental Retardation" 29 (29): 293-300, 1991

41 Essex, L. E, "Older Caregiving Parents : Division of Household Labor, Marital Satisfaction, and Caregiver Burden" 54 (54): 448-460, 2005

42 Lincoln, Y. S, "Naturalistic inquiry. Beverly Hills" Sage Publications 1985

43 Polkinghorne, D, "Methodology for the human sciences : Systems of inquiry" 1983

44 Meyer, D. J, "Living with a brother or sister with special needs : A book of sibs" University of Washington Press 1985

45 Krauss, M. W, "Later-life placement : Precipitating factors and family profiles" 1990

46 Rimmerman, A, "Involvement with and role perception toward an adult sibling with and without mental retardation" 67 (67): 10-15, 2001

47 Seidman, I. E, "Interviewing as qualitative research :　A guide for researchers in education and the social sciences" Teachers College Press 1991

48 Seltzer, M. M, "Informal supports for aging mentally retarded persons" 90 : 259-265, 1985

49 Edgerton, R, "Health Care for Aging People With Mental Retardation" 32 (32): 146-150, 1994

50 Bowen, M, "Family therapy in clinical pracyice" Jason, Aranson Inc 423-459, 1978

51 Seltzer, M. M, "Family caregiving over the life course, in Aging and Developmental Disabilities : Challenges for the 1990’s," American Association on Mental Retardation 1991

52 McCallion, P, "Exploring the impact of culture and acculturation on older families caregiving for persons with developmental disabilities" 46 : 347-357, 1997

53 Clark, R. E, "Expenditures of time and money by families of people with severe mental illness and substance use disorders community" 30 (30): 145-163, 1994

54 Smith, G. C, "Elderly mothers caring at home for offspring with mental retardation : A model of permanency planing" 99 : 487-499, 1995

55 Pruchuno, R. A, "Effects of formal and familial residential plans for adults with mental retardation on their aging mothers" 104 (104): 38-52, 1999

56 Grant, G, "Diffentiated coping strategies in families with children or adults with intellectual disabilities : The relevance of gender, family composition and the life span" 13 : 256-275, 2000

57 Hannah, M. E, "Competence and adjustment of siblings of children with mental retardation" 104 (104): 22-37, 1999

58 Orsmond, G. I, "Brothers and sisters of adults with mental retardation : Gendered nature of the sibling relationship" 105 (105): 486-508, 2000

59 Krauss, M, "Binding ties: The roles of adult siblings of persons with mental retardation" 34 (34): 83-93, 1996

60 Cleveland, E. W, "Attitudes and life commitments of older siblings of mentally retarded adults" 15 : 38-41, 1977

61 Bruckner, J, "Assessing the risk of falls in developmental disabilities" 19 (19): 206-211, 2003

62 Heller, T, "Aging family caregivers : Support resources and changes in burden and placement desire" 98 (98): 417-426, 1993

63 Janicki, M. P, "Aging and developmental disabilities" Brookes 1985

64 Greenberg, J. S, "Aging Parents of Adult With Disabilities : The Gratifications and Frustrations of Later-life Caregiving" 33 (33): 542-550, 1993

65 Prasher., V. P, "Adaptive behavior. In dementia, aging and intellectual disabilities : A handbook" Bruner/Mazel 57-182, 1998

66 한국보건사회연구원, "2005년도장애인실태조사" 2006

67 한국보건사회연구원, "2000년도장애인실태조사" 2001

68 한국보건사회연구원, "1995년도장애인실태조사" 1996

69 Robin, A. F, ""Who would I be without danny?" phenomenological case study of an adult sibling" 44 (44): 135-144, 2006