The authors conducted a secondary analysis using combined data sets from two studies offamilies with children and adults with developmental disabilities/mental retardation (DD/MR). The combined sample (N = 72) included 42 parents and siblings of children and adults with DD/MR in Oklahoma and 30 parents and siblings of adults with DD/MR in Ontario. Families identifedfour themes that influenced their interactions with health professionals: valuation of the individual; quality of individual and family life; knowledge of health care professionals; andfacilitative/obstructive professional characteristics. The majorfinding was that parentsfelt that many health care professionals demonstrated a lack of respect toward their children and themselves, ignored their expertise in managing the disability situation, and rarely listened to them.
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References
1.
Biersdorff, K. K.
(1991). Pain insensitivity and indifference: Alternative explanations for some medical catastrophes. Mental Retardation, 29,359-362.
2.
Byrne, E. A.
, & Cunningham, C. C. (1984). The effects of mentally handicapped children on families-A conceptual review. Journal of Child Psychology & Psychiatry, 26, 847-864.
3.
Chomicki, S.
, & Wilgosh, L. (1992). Health care concerns among parents of children with mental retardation. Children's Health Care, 21, 206-212.
4.
Darling, R.
(1979). Parents against society: A study of reactions to children with birth defects. Beverly Hills, CA: Sage.
5.
Faux, S. A.
(1991). Health care coordinationfor adults with developmental disabilities living in the community: A demonstration project (Grant 91-215, funded by Ontario Health Innovation Fund). Toronto: Health Innovation Fund, Ministry of Health.
6.
Feldman, M. A.
, Case, L., Towns, F., & Betel,J. (1985). Parent education Project I: Development and nurturance of children of mentally retarded parents. American Journal of Mental Deficiency, 90, 252-258.
7.
Goffman, I.
(1963). Stigma: Notes on the nature of a spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
8.
Hayden, M. F.
, & DePaepe, P. A. (1991). Medical conditions, level of care needs, and health-related outcomes of persons with mental retardation: A review. Journal of Association for Persons with Severe Handicaps, 16, 188-206.
9.
Jassak, P. E.
, & Knafl, K. A. (1990). Quality of family life: Exploration of a concept. Seminars in Oncology Nursing, 6,298-302.
10.
Kaiser, C. E.
, & Hayden, A. H. (1984). Clinical research and policy issues in parenting severely handicapped infants. InJ. Blacher (Ed.), Severely handicapped young children and theirfamilies: Research in review (pp. 275-317). New York: Academic Press.
11.
Klnafl, K.
, Breitmayer, B., Gallo, A., & Zoeller, L. (1992). Parents' views of health care providers: An exploration of the components of a positive working relationship. Children's Health Care, 21, 90-95.
12.
Knafl, K. A.
, & Deatrick, J. A. (1987). Conceptualizing family responses to a child's chronic illness or disability. Family Relations, 36, 300-304.
13.
Leff, P.
, & Walizer, E. (1992). Building the healing parnership: Parents, professionals, and children with chronic illness and disabilities. Cambridge, MA: Brookline.
14.
Miles, M. B.
, & Huberman, A. M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage.
15.
Minihan, P. M.
, Dean, D. H., & Lyons, C. M. (1993). Managing the care of patients with mental retardation: A survey of physicians. Mental Retardation, 31, 239-246.
16.
Nehring, W. M.
(1995, August 3). The changing role of nurses in developmental disabilities. Paper presented at the annual conference of the Nurses for Children with Developmental Disabilities (NCDD), Buffalo, NY.
17.
Palfrey, J. S.
, Samuels, R. C., Haynie, M., & Dammisa, M. L. (1994). Health care reform: What's in it for children with chronic illness and disability. Journal of School Health, 64, 223-228.
18.
Patterson, J. M.
, Jemell, J., Leonard, B. J., & Titus, J. C. (1994). Caring for medically fragile children at home: The parent-professional relationship. Journal of Pediatric Nursing, 9, 98-106.
19.
Seideman, R. Y.
, & Kleine, P. F. (1995). A theory of transformed parenting: Parenting a child with developmental delay/ mental retardation. Nursing Research, 44, 38-44.
20.
Seligman, M.
(Ed.). (1983). Thefamily with a handicapped child: Understanding and treatment. New York: Grune & Stratton.
21.
Seligman, M.
, & Darling, R. (1989). Ordinaryfamilies, special children:A systems approach to childhood disability. New York: Guilford.
22.
Thorne, S.
(1993). Negotiating health care: The social context of chronic illness. Newbury Park, CA: Sage.
23.
Thorne, S.
(1994). Secondary analysis of qualitative research: Issues and implications. In J. Morse (Ed.), Critical issues in qualitative research methods (pp. 263-279). Thousand Oaks, CA: Sage.
24.
Thorne, S. E.
, & Robinson, C. A. (1989). Guarded alliance: Health care relationships in chronic illness. Image: Journal of Nursing Scholarship, 21, 153-157.
25.
Tymchuk, A. J.
, & Feldman, M. A. (1991). Parentswith mental retardation and their children: Review of research relevant to professional practice. Canadian Psychology, 32, 484-494.
26.
Wolfensberger, W.
(1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21, 234-239.
27.
Wolfensberger, W.
(1985). An overview of social role valorization and some reflections on elderly mentally retarded persons. In M. P Janicki & H. M. Wieniewski (Eds.), Aging and developmental disabilities: Issues and approaches (pp. 61-76). Baltimore: Paul Brookes.
28.
Wolfensberger, W.
(1991). Reflections on a lifetime in human services and mental retardation. Mental Retardation, 29, 1-15.
