Determinants of Parental Satisfaction with Rehabilitation Service Delivery to Children with Childhood-Onset Physical Disabilities: A Turkish Sample

Yıl 2024, Cilt: 6 Sayı: 3, 401 - 412, 24.09.2024

Hasan Bingöl , Nazım Tolgahan Yıldız , Hikmet Kocaman

https://doi.org/10.37990/medr.1506052

Öz

Aim: Studies have demonstrated that family centeredness, or family involvement in decision-making and care provision, is crucial for achieving the best results in pediatric rehabilitation and is also directly associated to parental/caregiver satisfaction with rehabilitation services. This study aimed to explore the potential determinants of parents’/caregivers’ satisfaction with rehabilitation services based on the various elements of family centeredness.
Material and Method: Authors included the parents/caregivers of 120 children with physical disabilities aged 5-18 years (mean 10.14 years, SD 4.17). The Measure Process of Care-20 (MPOC-20) was used to assess parents'/caregivers' perceptions of the family centeredness in provision of rehabilitation services and therefore parental/caregiver satisfaction with rehabilitation service delivery to children.
Results: Service-related and child-related factors accounted for 78% and 67% of the variances in the parents’/caregivers’ satisfaction with being provided opportunities for them to make decisions about rehabilitation services (MPOC-20-Enabling and Partnership subscale), respectively. Parental/caregiver satisfaction with service delivery in the context of sharing information about child’s progress was correlated with service-related, child-related, and parent/caregiver-related factors (adjusted R2=0.75, 0.71, and 0.68, respectively). Satisfaction with service delivery regarding coordinated and comprehensive care was significantly influenced by the service provider and the parent/caregiver-related variables (R2=0.63 and R2=0.59, respectively). Finally, in the event of satisfaction with services in terms of respectful and supportive care, each factor accounted for a small and approximately equal amount of variance in the mean score of relevant MPOC-20 subdomain (range of adjusted R2=0.10–0.18).
Conclusion: Factors or determinants identified in the current study as having the potential to increase parents’/caregivers’ satisfaction with rehabilitation services should be considered when providing rehabilitation services.

Anahtar Kelimeler

Childhood disability , rehabilitation service , family-centered service , children , physiotherapy

Etik Beyan

The study was carried out after approval from the Human Research Ethics Committee at Mus Alparslan University (no: 03.04.2022-45864)

Destekleyen Kurum

Yok

Teşekkür

Authors are deeply grateful to the families, service providers and their organizations who participated in this study as the study would not have been completed without their dedication

Kaynakça

• Ellingsen KM, Simeonsson RJ. Defining childhood disability: ICF-CY developmental code sets. Disabil Rehabil. Published online January 19, 2024. doi:10.1080/09638288.2024.2303385.
• Picton-Howell Z. The human rights of children with disabilities: how can medical professionals better fulfil rather than breach them?. Dev Med Child Neurol. 2023;65:1429-35.
• Faccioli S, Pagliano E, Ferrari A, et al. Evidence-based management and motor rehabilitation of cerebral palsy children and adolescents: a systematic review. Front Neurol. 2023;14:1171224.
• Novak I, Morgan C, Fahey M, et al. State of the evidence traffic lights 2019: systematic review of interventions for preventing and treating children with cerebral palsy. Curr Neurol Neurosci Rep. 2020;20:3.
• Jenkin T, Anderson VA, D'Cruz K, et al. Family-centred service in paediatric acquired brain injury rehabilitation: Bridging the gaps. Front Rehabil Sci. 2022;3:1085967.
• Antunes AAM, Vaz DV. Family-Centered practice in a Brazilian rehabilitation network service. Braz J Phys Ther. 2021;25:544-51.
• Jackman M, Lannin N, Galea C, et al. What is the threshold dose of upper limb training for children with cerebral palsy to improve function? A systematic review. Aust Occup Ther J. 2020;67:269-80.
• Poojari DP, Umakanth S, Maiya GA, et al. Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review. F1000Res. 2023;12:790.
• United Nation: Convention on the rights of persons with disabilities. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities access date 12.11.2006
• McCoy SW, Palisano R, Avery L, et al. Physical, occupational, and speech therapy for children with cerebral palsy. Dev Med Child Neurol. 2020;62:140-6.
• Mendoza BA, Fortier MA, Trinh LN, et al. Factors impacting parental and child satisfaction in the perioperative setting. Paediatr Anaesth. 2021;31:932-43.
• Hao Z, Ruggiano N. Family-centeredness in dementia care: what is the evidence?. Soc Work Health Care. 2020;59:1-19.
• McCarthy E, Guerin S. Family-centred care in early intervention: a systematic review of the processes and outcomes of family-centred care and impacting factors. Child Care Health Dev. 2022;48:1-32.
• Law M, Hanna S, King G, et al. Factors affecting family-centred service delivery for children with disabilities. Child Care Health Dev. 2003;29:357-66.
• El Ö, Baydar M, Berk H, et al. Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disabil Rehabil. 2012;34:1030-3.
• Palisano R, Rosenbaum P, Walter S, et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39:214-23.
• CanChild. Gross motor function classification system - expanded & revised. https://canchild.ca/en/resources/42-gmfcs-e-r access date 03.04.2022
• Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008;50:744-50.
• Towns M, Rosenbaum P, Palisano R, Wright FV. Should the gross motor function classification system be used for children who do not have cerebral palsy?. Dev Med Child Neurol. 2018;60:147-54.
• King S, King G, Rosenbaum P. Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC− 20). Children's Health Care. 2004;33:35-57.
• King SM, Rosenbaum PL, King GA. Parents ‘perceptions of caregiving: development and validation of a measure of processes. Dev Med Child Neurol. 1996;38:757-72.
• King G, Kertoy M, King S, et al. A measure of parents' and service providers' beliefs about participation in family-centered services. Children's Health Care. 2003;32:191-214.
• Türker D, Özal C, Karahan S, Günel M. Measure of processes of care (MPOC-56 and 20): Turkish adaptation, reliability, and validity study. Turkish Journal of Pediatrics. 2023;65:512-22.
• Geijen M, Ketelaar M, Sakzewski L, et al. Defining functional therapy in research involving children with cerebral palsy: a systematic review. Phys Occup Ther Pediatr. 2020;40:231-46.
• Jackman M, Sakzewski L, Morgan C, et al. Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline. Dev Med Child Neurol. 2022;64:536-49.
• Araneda R, Ebner-Karestinos D, Paradis J, et al. Changes Induced by early hand-arm bimanual intensive therapy including lower extremities in young children with unilateral cerebral palsy: a randomized clinical trial. JAMA Pediatr. 2024;178:19-28. Erratum in: JAMA Pediatr. 2024;178:206.
• Errante A, Saviola D, Cantoni M, et al. Effectiveness of action observation therapy based on virtual reality technology in the motor rehabilitation of paretic stroke patients: a randomized clinical trial. BMC Neurol. 2022;22:109.
• Ramey SL, DeLuca SC, Stevenson RD, et al. Constraint-induced movement therapy for cerebral palsy: a randomized trial. Pediatrics. 2021;148:e2020033878.
• Law M, Hanna S, King G, et al. Factors affecting family-centred service delivery for children with disabilities. Child Care Health Dev. 2003;29:357-66.
• Mutlu A, Kara OK, Gunel MK, et al. Agreement between parents and clinicians for the motor functional classification systems of children with cerebral palsy. Disabil Rehabil. 2011;33:927-32.
• Beshir M, Tilahun T, Hordofa DF, et al. Caregiver satisfaction and its associated factors in pediatric wards of Jimma University Medical Center, Southwest Ethiopia. BMC Health Serv Res. 2022;22:1058.
• Cacioppo M, Lucas C, Dai S, et al. Parent satisfaction with medical and rehabilitation services for children with physical disabilities during lockdown. Ann Phys Rehabil Med. 2023;66:101726.