Quality of life of a child with cerebral palsy: the role of parental competence in aspects of daily care and upbringing
DOI:
https://doi.org/10.15574/SP.2026.1(153).128135Keywords:
cerebral palsy, rehabilitation, early intervention, individual rehabilitation program, functioning, inclusion in society, quality of life, International Classification of Functioning, Disability and Health (ICF), family-centered approach, parenting competenciesAbstract
Cerebral palsy (CP) is one of the most common causes of childhood disability in the world and in Ukraine. This disorder affects the child's posture, trunk control, and motor activity, which can lead to the development of secondary complications and disability. Developing parents' competencies in caring for and raising children with CP within the framework of early intervention (EI) helps reduce the risk of secondary disorders and increase the child's functional capabilities. An important role in this process is played by the EI service, which provides individualized support and rehabilitation of children from birth to four years.
Aim - to carry out a comparative analysis of the quality of life of children with CP depending on the level of parental competence in caring for and raising children with spastic CP aged 4 to 14 years.
Materials and methods. 105 children (aged 4-14 years) were studied, divided into two groups: group A (43 children who received the RP service); group B (62 children who did not receive specialized intervention). The level of quality of life was assessed using a CPQOL.
Results. Analysis of the results indicates that the higher the level of parental competence, the higher the level of quality of life according to the indicators of the sections: “Health”, “Family and friends”, “Participation”, “Communication”, “Access to services”, “Your health”.
Conclusions. The EI service an individual rehabilitation program focused on developing parents' competencies in caring for and raising children with CP has a positive impact on the quality of life of children, contributing to improved performance and functioning.
No conflict of interest was declared by the authors.
References
Bax M, Goldstein M, Rosenbaum P, Leviton A, Paneth N, Dan B et al. (2005). Proposed definition and classification of cerebral palsy. Developmental Medicine & Child Neurology. 47(8): 571-6. https://doi.org/10.1017/S001216220500112X; PMid:16108461
Davis E, Shelly A, Waters E, Davern M. (2010). Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Developmental Medicine & Child Neurology. 52(2): 174-180. https://doi.org/10.1111/j.1469-8749.2009.03382.x; PMid:19549193
Fisher RA. (1992). Statistical Methods for Research Workers. In: Kotz, S., Johnson, N.L. (eds) Breakthroughs in Statistics. Springer Series in Statistics. Springer, New York, NY. https://doi.org/10.1007/978-1-4612-4380-9_6; PMCid:PMC10059684
Kyryk OV. (2023). Current trends in individual rehabilitation programs for children with cerebral palsy: a crucial step towards improving quality of life (literature review). Modern Pediatrics. Ukraine. 7(135): 94-104. https://doi.org/10.15574/SP.2023.135.94
Kyryk OV, Nazar OV. (2024). Comparative assessment of quality of life and functional status of children with cerebral palsy according to their early treatment. Modern Pediatrics. Ukraine. 6(142): 79-87. https://doi.org/10.15574/SP.2024.6(142).7987
Kyryk OV, Nazar OV. (2024). International practices in diagnosing the level of functioning of children with cerebral palsy (literature review). Modern Pediatrics. Ukraine. 4(140): 83-92. doi: https://doi.org/10.15574/SP.2024.140.83
Kyryk OV, Nazar OV. (2024). The impact of an individual rehabilitation program on the activities and participation of children with cerebral palsy. Modern Pediatrics. Ukraine. 8(144): 48-54. https://doi.org/10.15574/SP.2024.8(144).4854; PMid:37835548
Kyryk OV, Nazar OV. (2025). Laboratory and instrumental diagnostics and individual rehabilitation program for children with cerebral palsy. Modern Pediatrics. Ukraine. 1(145): 57-63. https://doi.org/10.15574/SP.2025.1(145).5763
McConnell D, Savage A. (2015). Stress and Resilience Among Families Caring for Children with Intellectual Disability: Expanding the Research Agenda. Current Developmental Disorders Reports. 2: 100-109. https://doi.org/10.1007/s40474-015-0040-z
Morgan C, Fetters L, Adde L, Badawi N, Bancale A, Boyd RN et al. (2021). Early Intervention for Children Aged 0 to 2 Years With or at High Risk of Cerebral Palsy: International Clinical Practice Guideline Based on Systematic Reviews. JAMA Pediatrics. 175(8): 846-858. https://doi.org/10.1001/jamapediatrics.2021.0878; PMid:33999106 PMCid:PMC9677545
Nazar OV. (2012). Quality of Life Assessment in Children with Cerebral Palsy. Ukrainian Journal of Psychoneurology. 20(3): 125.
Novak I, McIntyre S, Morgan C, Campbell L, Dark L, Morton N et al. (2013). A systematic review of interventions for children with cerebral palsy: state of the evidence. Developmental Medicine & Child Neurology. 55(10): 885-910. https://doi.org/10.1111/dmcn.12246; PMid:23962350
Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J et al. (2017). Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy: Advances in Diagnosis and Treatment. JAMA Pediatrics. 171(9): 897-907. https://doi.org/10.1001/jamapediatrics.2017.1689; PMid:28715518 PMCid:PMC9641643
Oceania academy (Australia). Quality of Life Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) https://www.oceaniaacademy.org/research/cpqol/
Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. (2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine & Child Neurolog. 50(10): 744-750. https://doi.org/10.1111/j.1469-8749.2008.03089.x; PMid:18834387
Rosenbaum P, Stewart D. (2004). The World Health Organization International Classification of Functioning, Disability, and Health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Seminars in Pediatric Neurology. 11(1): 5-10. https://doi.org/10.1016/j.spen.2004.01.002; PMid:15132248
Shapiro SS, Wilk MB. (1965). An analysis of variance test for normality (complete samples). Biometrika. 52(3-4): 591-611. https://doi.org/10.1093/biomet/52.3-4.591
Shrader MW, Wimberly L, Thompson R. (2019). Hip Surveillance in Children With Cerebral Palsy. The Journal of the American Academy of Orthopaedic Surgeons. 27(20): 760-768. https://doi.org/10.5435/JAAOS-D-18-00184; PMid:30998565
Sullivan PB, Juszczak E, Bachlet AM, Lambert B, Vernon-Roberts A, Grant HW et al. (2005). Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study. Developmental Medicine & Child Neurology. 47(2): 77-85. https://doi.org/10.1017/S0012162205000162; PMid:15707230
Varni JW, Seid M, Rode CA (1999). The PedsQL: measurement model for the pediatric quality of life inventory. Medical Care. 37(2): 126-139. https://doi.org/10.1097/00005650-199902000-00003; PMid:10024117
Verkhovna Rada Ukrayiny. (2021). Pro reabilitatsiyu u sferi okhorony zdorovya. Zakon Ukrayiny 2021 Hruden 15, No. 1962-IX. URL: https://zakon.rada.gov.ua/laws/show/1053-20#Text.
World Health Organization. (2007). International Classification of Functioning, Disability, and Health: Children & Youth Version: ICF-CY. Geneva: WHO: 351.
World Health Organization & United Nations Children's Fund (UNICEF) (2024). Social support to persons and children with disabilities in Ukraine. URL: https://www.unicef.org/ukraine/en/media/53711/file/UKR%20Social%20support%20to%20PwD%20and%20CwD.pdf.pdf?utm_source=chatgpt.com.
World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 310(20): 2191-2194. https://doi.org/10.1001/jama.2013.281053; PMid:24141714
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