A PROFILE OF CHILDREN WITH CEREBRAL PALSY: IDENTIFYING UNMET NEEDS IN HEALTH AND SOCIAL CARE

Authors

  • M Wannakukoralage Department of Community Medicine, Faculty of Medicine, University of Ruhuna, Sri Lanka
  • T Athukorala Department of Community Medicine, Faculty of Medicine, University of Ruhuna, Sri Lanka
  • N Liyanaarachchi Department of Paediatrics, Faculty of Medicine, University of Ruhuna, Sri Lanka
  • C Wijesinghe Department of Community Medicine, Faculty of Medicine, University of Ruhuna, Sri Lanka

DOI:

https://doi.org/10.17501/wdrc2016-1107

Keywords:

Cerebral palsy, unmet needs, health, special education, social support

Abstract

Provision of care to a child with Cerebral Palsy (CP) requires individualized assessment and management of all associated problems. They need special education and their families need social support to face day-to-day demands of caregiving. We reviewed the characteristics of 375 children with CP attending Teaching Hospital, Karapitiya to identify their health problems and current level of health and social care utilization. Data were collected through questionnaire-based interviews with caregivers or extracted from child’s medical records. The results revealed that approximately 2/3rd of the children had spastic quadriplegic CP and 54% had some co-morbidity. The majority (30.9%) had 3-4 functional problems. Problems with mobility (77.6%), social activities of daily living (69.3%), bladder/bowel function (70.4%) and speech (57.9%) were the common functional problems. Learning difficulties were reported in 29.3%. Nearly 17% had behavioural and emotional problems. Approximately 98% of the children received physiotherapy. Despite higher numbers having problems with speech and activities of daily living, only 48% received speech therapy and less than 10% received occupational therapy. Among pre-school and school age children, over 70% had never attended school. Only 17.2% of school attendees received special education. Although nearly 70% was from rural, low socio-economic backgrounds, only 12.8% received any form of external financial support. We conclude that children with CP and their families have many unmet needs in the areas of therapy, special education and social support. These needs should be addressed adequately in developing long-term care plans for children with CP, in order to achieve better outcomes.

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References

BARKER, D.J.P., HALL, A.J., 1991, Practical Epidemiology, 4th ed. (Edinburgh, UK: Churchill Livingstone).

BERTULE, D., VETRA, A., 2014, The family needs of parents of preschool children with cerebral palsy: The impact of child's gross motor and communications functions, Medicina 50, 323-328.

BREHAUT, J.C., KOHEN, D.E., GARNER, R.E., MILLER, A.R., LACH, L.M., KLASSEN, A.F., ROSENBAUM, P.L., 2009, Health Among Caregivers of Children With Health Problems: Findings From a Canadian Population-Based Study. American Journal of Public Health, 99 (7), 1254-62.

HA, J., GREENBERG, J.S., SELTZER, M.M., 2011, Parenting a Child With a Disability: The Role of Social Support for African American Parents, Families in Society: The Journal of Contemporary Social Services, 405-411.

KRIGGLER, K.W., 2006, Cerebral palsy: an overview. American Family Physician, 73 (1), 91-100.

MINISTRY OF SOCIAL WELFARE, 2003, National Policy on Disability for Sri Lanka, (Colombo, Sri Lanka: Ministry of Social Welfare)

MISSIUNA, C., SMITS, C., ROSENBAUM, P., WOODSIDE, J., LAW, M., 2001, The prevalence and incidence of childhood disabilities: Facts and issues, A paper published by the McMaster University, Ontario, Canada.

NEWACHECK, P.W., KIM, S.E., 2005, A National Profile of Health Care Utilization and Expenditures for Children With Special Health care needs, Archives of Paediatric and Adolescent Medicine, 159, 10-18.

PARISH, S., MAGANA, S., ROSE, R., TIMBERLAKE, M., SWAINE, J.G., 2012, Health care of Latino children with autism and other developmental disabilities: quality of provider interaction mediates utilization. American Journal of Intellectual & Developmental Disability, 117(4), 304-15.

PEIRIS-JOHN, R.J., ATTANAYAKE, S., DASKON, L., WICKRAMASINGHE, A.R., AMERATUNGA, S., 2014, Disability studies in Sri Lanka: priorities for action, Disability and Rehabilitation, 36(20), 1742-8.

RAINA, P., O’DONNELL, M., ROSENBAUM, P., BREHAUT, J., WALTERS, S.D., RUSSELL, D., SWINTON, M., ZHU, B., WOOD, E., 2005, The health and well being of caregivers of children with Cerebral palsy. Paediatrics, 115 (6), 626-36.

ROSEN, M.G., DIKINSON, J.C., 1992, The incidence of cerebral palsy, American Journal of Obstetrics and Gynaecology, 167, 417- 423.

ROSENBAUM, P., 2003, Cerebral palsy: what parents and doctors want to know. British Medical Journal, 326, 970-974.

SANKAR, C., MUNDKAR, N., 2006, Cerebral palsy - definition, classification, etiology and early diagnosis, Indian Journal of Paediatrics, 72, 865-8.

SZILAGYI, P.G., SHENKMAN, E., BRACH, C., LACLAIR, B., ZWIGONSKY, N., DICK, A., SHONE, L.P., SCHAFFER, V.A., COL, J.F., ECKERT, G., KLEIN, J.D., LEWIT, E.M., 2003, Children With Special Health Care Needs Enrolled in the State Children's Health Insurance Program (SCHIP): Patient Characteristics and Health Care Needs, Pediatrics, 112 (6 Pt 2), e508.

UNITED NATIONS CHILDREN’S FUND (UNICEF), 2012, The right of children with disabilities to education: A rights based approach to inclusive education, Geneva (Switzerland): UNICEF, p20.

VAN DYKE, P.C., KOGAN, M.D., MCPHERSON, M.G., WEISSMAN, G.R., NEWACHECK, P.W., 2004, Prevalence and Characteristics of Children with Special Health Care Needs, Archives of Paediatric and Adolescent Medicine,158(9), 884-890.

WERNER, D., 2006, Disabled village children. A guide for community health workers, rehabilitation workers and families, (Berkeley, CA: Hesperian Books)

WORLD HEALTH ORGANIZATION (WHO), 2005, Making every mother and child count: The World Health Report 2005, Geneva, WHO.

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Published

2019-10-22

How to Cite

Wannakukoralage, M., Athukorala, T., Liyanaarachchi, N., & Wijesinghe, C. (2019). A PROFILE OF CHILDREN WITH CEREBRAL PALSY: IDENTIFYING UNMET NEEDS IN HEALTH AND SOCIAL CARE. Proceedings of the World Disability &Amp; Rehabilitation Conference, 1(1), 47–53. https://doi.org/10.17501/wdrc2016-1107