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Issue title: Cerebral Palsy
Guest editors: Deborah Gaebler-Spira and Michael Green
Article type: Research Article
Authors: Umar, Abdullahi B.a | Yakasai, Abdulsalam M.b; c; * | Danazumi, Musa S.d; f | Shehu, Usman T.e | Badaru, Umaru M.f | Kaka, Bashirf
Affiliations: [a] Department of Physiotherapy, Sir. Muhammad Sanusi Specialist Hospital, Kano, Nigeria | [b] Department of Physiotherapy, University of KwaZulu-Natal, Durban, South Africa | [c] Medical Rehabilitation Therapist Board of Nigeria, Kano Zonal Office, Kano, Nigeria | [d] Department of Physiotherapy, Federal Medical Center, Nguru Yobe, Nigeria | [e] Department of Public Health, University of Salford, Manchester, UK | [f] Department of Physiotherapy, Faculty of Medicine, Bayero University, Kano, Nigeria
Correspondence: [*] Corresponding author: Abdulsalam Mohammed Yakasai, Department of Physiotherapy, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa. Tel.: +23 480 6084 0806; E-mail: [email protected].
Abstract: PURPOSE: This study aimed to identify the needs and priorities of parents of children with cerebral palsy (CP) in order to improve care by increasing family participation in rehabilitation programmes. METHODS: This cross-sectional questionnaire-based study was conducted between January to March 2019. Convenience sampling was used to recruit 43 family members (18 years and above) of children with CP who came to the physiotherapy departments for rehabilitation services for their children. Fisher’s exact test was used to analyse the association between socio-demographic characteristics and each of the need items. RESULTS: Five different items were identified to be the family needs that were most frequently met: a) ‘need for active involvement in the child’s treatment and therapies’ (n= 40; 93.0%), b) ‘need for the provision of standard medical care (n= 39; 90.7%), c) ‘need for questions to be answered honestly’ (n= 38; 88.4%), d) ‘need for healthcare professionals to respect the child’s wishes’ (n= 36; 83.7%), e) ‘need for mothers to discuss their feelings (depression, stress etc.) with someone who has similar experience’ (n= 36; 83.7%). Conversely, three items were the most unmet family needs: a) ‘need to have professionals to consult whenever the child needs help’ (n= 39; 90.7%), b) ‘need to be informed about the child’s prognosis’ (n= 41; 95.3%), and c) ‘need to have financial support to provide the child with adequate care’ (n= 43; 100%). CONCLUSION: All participants overwhelmingly reported that their financial needs were their highest priority. The multiple needs of families of children with disabilities must be assessed and considered in rehabilitation services when treating children with CP.
Keywords: Cerebral palsy, disability, family needs, family participation, rehabilitation services, Nigeria
DOI: 10.3233/PRM-200696
Journal: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 2, pp. 265-274, 2021
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