Cerebral Palsy and Chronic Pain

Abstract

The experiences of chronic pain among children and adolescents with cerebral palsy (CP) were examined in this survey-based study. Perspectives of both the individual and the parent were solicited in a preliminary sample of 20 youths with CP, ages 6-to-17 years from a metropolitan area. Selected participants completed in-person, structured interviews that focused on quality of life with attention to pain experiences. Quantitative data were analyzed descriptively. Seventy percent of participants (n = 14) experienced recurrent chronic pain of moderate intensity on a daily or weekly basis. Greater than half of those participants (n = 9) reported that pain presented a problem for them and especially interfered with self-care and with sleep. Pain appears to be a problem for many youths with CP, and may create additional interference with routine activities of daily living and participation. Further exploration regarding pain experiences and the nature of pain interference is warranted in order to address development and maintenance of routine activities and participation by children and adolescents with CP.

Key Words:

• Pain
• children
• disability
• Brief Pain Inventory
• Functional Disability Inventory

Additional information

Notes on contributors

Joyce M. Engel

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.

Mary-Ann L. Fulks, MSc, OT(C), is Occupational Therapist, Vancouver Community Mental Health Service and Clinical Assistant Professor, School of Rehabilitation Sciences, University of British Columbia. This study was completed in partial fulfillment of a Master of Science degree.

Laura Zawacki, MS, PT, PCS, currently practices Pediatric Physical Therapy in the Chicago metropolitan area.

Judy T. Jennings holds a Certificate in PT and an MA in Special Education and has 25 years of experience as a PT working with children from infancy to high school.

Nicholas S. Payne, PhD, recently retired from 40 years of experience in statistics and data analysis at Proctor & Gamble, Cincinnati, OH. He was recently Research Fellow in Data Analysis, clarifying the needs of mothers and babies.

At the time of this study, Marianne Kratochvil, MA, was a social worker at the Glenrose Rehabilitation Hospital, Edmonton, Alberta. She has since retired.