The Perceived Effects of Parent-Led Support Groups for Parents of Children with Disabilities

Abstract

Parent-led support groups for parents who have children with disabilities are voluntary organizations with goals to provide social support and information and to foster advocacy. The purpose of this study was to explore parents' perceptions of the effect of parent-led support groups in providing parents with support and knowledge and in improving parents' ability to deal with childhood disability issues. Qualitative methods were used to examine the experiences of members of nine parent-run support groups. From these groups, 20 parents were interviewed about the benefits and limitations of participation in a support group. Information was also collected by observing support group meetings and reviewing group documents. Interview, observation, and document data were analysed to identify emerging themes. Results of the study indicated that the effects of belonging to a parent-led parent support group were substantial. Through these groups, parents gain increased skills, an increased sense of power and a sense of belonging. Participants are able to connect with each other and provide support and skills to deal with the day-to-day issues of raising a child with disabilities.

Key Words:

• Parent perceptions
• parent support groups
• qualitative methods

Additional information

Notes on contributors

Mary Law

Michael Lepp, PT, is in private practice, Associate Instructor of the Upledger Institute, and Clinical Instructor, Case Western Reserve University School of Dentistry, Cleveland, OH.

Marie McKenzie, MS, OTR, is in private practice. She was Coordinator of Occupational Therapy at Scottish Rite Hospital at the time of this study.

Heather Miller, MS, OTR/L, is currently employed by Madison County Educational Service Center, providing therapy services to the county's pre-schools. This research was completed in partial fulfillment of the requirements of an MS degree at Ohio State University.

Linda Viscardis, BA, is Team Leader and Community Development Worker, Peterborough Family Enrichment Centre. She is Co-Founder of P.R.O.S.P.E.C.T.S., a support and advocacy group for families who have children with special needs.

Debra Stewart, BSc, OT(C), is Occupational Therapist, Erinoak, Serving Young People with Physical Disabilities, Mississauga, ON, and Clinical Lecturer, School of Rehabilitation Science, McMaster University.

Janette McDougall, MA, was Project Coordinator

Kip Husted, BEd, was a parent representative on the study team.

Aviva Yochman, MA, OTR, was a student in the School of Occupational Therapy, Faculty of Medicine, The Hebrew University of Jerusalem, Israel at the time of this study.

Imelda Burgman, MA OTR/L BCP, completed her MA in Movement Sciences at Teachers College, Columbia University, and was an Occupational Therapist at The Shield Institute, Bronx, NY. She is currently Lecturer, Habilitation, School of Community Health, Faculty of Health Studies, Charles Sturt University, Albury, N.S.W., Australia.

Barbara J. Steva, OTWL, BCP, is Occupational Therapist, University of New England Community Occupational Therapy Clinic, Saco, ME. She was Director of Occupational Therapy and Therapeutic Recreation, Franciscan Children's Hospital and Rehabilitation Center, Boston, MA, when this work was completed.