DOCUMENT RESUME ED 371 529 EC 303 116 AUTHOR Bloom, Barbara TITLE Child Disability: A Study of Three Families. INSTITUTION Saskatchewan Univ., Saskatoon. Dept. for the Education of Exceptional Children. PUB DATE May 93 NOTE 306p.; For a summary of the study, see EC 303 117. PUB TYPE Reports Research/Technical (143) EDRS PRICE MF01/PC13 Plus Postage. DESCRIPTORS Anxiety; Case Studies; *Child Rearing; *Coping; Elementary Secondary Education; Family Relationship; Foreign Countries; *Human Services; Interviews; *Mental Retardation; Observation; *Parent Attitudes; *Parent Child Relationship; Qualitative Research; Questionnaires; Stress Variables ABSTRACT This qualitative study used ouestionnaires, interviews, and observations to assess what having children with disabilities means to three families. The disabilities include severe mental retardation and seizure disorder, Down syndrome, and neurofibromatosis. Interview data were categorized into the following five areas: the children, stress/anxiety, services, pel,'.onal comments, and survival strategies. Data from MAPS (McGill Action Planning System) planning sessions with the three families are also provided. Results indicate that these families of disabled children do all the things that families ordinarily do to help their children grow and develop, but they do these things more intensely and for a longer period of time. Of particular note for these families was the intensity of the illness(es) of their children and the level and intensity of family interactions with health care professionals. Each family had many interactions, as well, with several other service delivery agencies. While many professionals provided positive, appropriate, and responsive service, each family also experienced very negative non-service from some professionals. Recommendations are offered concerning attitudes, policies, and service provision. Appendices contain interview questions, interview data, questionnaires, and tables of questionnaire data. (Contains 17 references and a bibliography of 39 items.) (JDD) *********************************************************************** Reproductions supplied by EDRS are the best that can be made * from the original document. *********************************************************************** U.S. DEPARTMENT OF EDUCATION Office of Educational Research and Improvement EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) WIC-us document has been reproduced as received from the person or organization originating it O minor changes have been made to improve reproduction quality Points of view or opinions stated In thosdocu- ment do not necessarily represent official OERI position or policy CHILD DISABILITY :A. Study of Three Families "PERMISSION TO REPRODUCE THIS MATERIAL HAS BEEN GRANTED BY La./. eje-1")-$4---1 TO THE EDUCATIONAL RESOURCES Barbara Bloom Ph.D. INFORMATION CENTER (ERIC)." Department for the Education of Exceptional Children University of Saskatchewan May, 1993 The author claims copyright. Use shall not be made of any of the N attached material without proper acknowledgement, as follows: 071 a Bloom, B.(1993). Child Disability: A Study of Three Families. (1) Saskatoon SK: Department for the Education of Exceptional Children, University of Saskatchewan. PEST COPY AVAILABLE 2 ABSTRACT: FAMILY PERSPECTIVES OF CHILD DISABILITY Early intervention (EI) for disabled and/or disadvantaged children has become common practice in North America over the past twenty years. In response to research findings, services to young children have increasingly moved from child-centered interventions, to interventions directed to families. The long-term process of delivering EI services to young children has been a wedge of change for service delivery to disabled people of all ages. As a result, many professionals are attempting to understand child disability and, to a lesser extent, adult disability from the broader perspective of the disabled person's family. This study asks the question: What does it MEAN to a family to have a disabled child? It is a qualitative study and uses qualitative methods, procedures, and analyses. Three families, each with a disabled child, took part in the study. Mothers and, to a lesser extent, fathers and siblings were interviewed and observed. This research attempts to tell the stories of each of these families through the eyes of the mothers, who are identified as co-researchers. Data were gathered through interviows, observations, and questionnaires. Data from fathers and siblings were gathsred to extend the base of information and to verify each mothers' story. Individual MAPS planning sessions were done to obtain additional information and to support the families in their daily living and long-term planning for their disabled children. Family histories were recorded in first interviews. "Meaning" wae addressed through each mother's response to systematic open-ended questions in the first and subsequent interviews. The interviewer, while attempting to keep the interviews focused, encouraged digression and elaboration. Both were completely under the control of each mother. Interviews were transcribed and analyzed in order to identify emerging themes in the lives of these families. Planning session information and questionnaire responses were recorded and analyzed for further understanding. Transcripts of interviews and all written analyses and discussions were examined by the co-researchers for respect for confidentiality, clarity and interpretation verification. Results of this study indicate that the families of these disabled children do all the things that families ordinarily do to help their children grow and develop; but they do these things more intensely and for a longer period of time. Of particular note for these families, was the intensity of the illness(ea) of their children and the level and intensity of family interactions with health care professionals. Each family had many interactions, as well, with several other service delivery agencies. While many professionals provided positive, appropriate, and responsive service, each family also experienced unnecessary and very negative non-service from some professionals. This author is particularly struck by three things: the amount of time and energy these parents are compelled to direct toward obtaining services for their children; the level and quality of family adaptations and coping strategies; and the level of respect and love these families generate, maintain, and continue to express to each other. ACKNOWLEDGEMENTS Every research project involves the work of many people. Such is the case for this project. There are at least two important differences here, however, at least as compared to most educational research that I have studied in the last decade. Because of the need for confidentiality, the real-life contributors to this research project cannot be named; and because of the nature of the research, the mothers and families of this study contributed far more than is the ordinary contribution of study "subjects". Though nameless, I want very much to acknowledge the work of these mothers and these families, without whom this project would never have been completed. Despite their busy lives, each mother gave me about five hours of their time for interviews, and each family gave me two additional evenings of their time for a family conference and a MAPS planning session. As well, mothers checked all written transcripts, interpretations and analyses before any items became public information. Because of their major contribution, I have referred to these mothers as "co-researchers", not as "subjects". While I am writing this report and will receive "credit" for the endeavor, my role has been to be the medium through which these mothers and their families have been able to tell their stories. In analyzing the data and in trying to understand the data, I have attempted to put myself in the situation of the mothers. I am trying to see child disability from the families' and especially from the mothers' perspectives. It is important to acknowledge, as well, the contribution of the friends/coworkers of two of the families, who contributed to our MAPS planning sessions. They volunteered a full evening to this project and offered many good ideas and support in the session. The third family had other children living in the home, who were of an age that they could be involved in our family discussion. These siblings deserve high 'raise for their contributions to our MAPS plantling session for their family. Ann Crichlow, of Saskatoon, (who can ? named) transcribed all our interviews and provided me with draft copie- of everything and perfect final copies. Ms. Crichlow often does word processing for me and is always a big help. In this study she also transcribed audio tapes for many hours and for many pages. As usual, her work was invaluable for me and contributed greatly to the completion of the project. I wish to acknowledge "Betty", the secretary for the department of the university to which I was attached during my sabbatical, for her pleasant manner and ready help during all the photocopying sessions I carried out in her office. The Department for the Education of Exceptional Children, University of Saskatchewan, and the University itself, is acknowledged for the provision of time and money for this sabbatical study. I greatly appreciate having had this sabbatical opportunity. Lastly I wish to acknowledge the advocacy group (referred to in this report as The Society) which