Parents' Perspectives of Changes in Movement Affecting Daily Life Following Selective Dorsal Rhizotomy in Children with Cerebral Palsy

Abstract

Previous reports indicate that for children with cerebral palsy, increased motion of the joints and decreased spasticity can be achieved through selective dorsal rhizotomy (SDR). The impact of these changes on daily life, however, remain to be determined. The purpose of this study was to identify parents' opinions of the effects that SDR has on daily life of their children with cerebral palsy. We used a qualitative research approach, with semi-structured interviews of parents of children who underwent SDR about one year previously. The most apparent finding from these interviews was that parents perceived the increased motion itself to be valuable. The families reported that the children could move faster and with less effort after SDR, and several parents stated that the children appeared to be more “normal-looking.” Parents also reported that the children could perform previously learned activities better; however, they had not learned many new activities. Reported negative effects included sudden fatigue, weakness, or hip problems in most children.

Key Words:

• Activities of daily living
• cerebral palsy
• Gross Motor Function Measure
• posterior dorsal rhizotomy
• parents
• qualitative research

Additional information

Notes on contributors

Lena Borell

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.