Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study

dc.contributor.advisorMorrow, Brenda
dc.contributor.advisorRichards, Mark
dc.contributor.authorVan Aswegen, Shayne Robyn
dc.date.accessioned2026-01-28T12:02:33Z
dc.date.available2026-01-28T12:02:33Z
dc.date.issued2025
dc.date.updated2026-01-28T12:00:47Z
dc.description.abstractBackground: Children living in resource-limited settings (RLS) with severe cerebral palsy (CP) are at considerable risk of developing secondary musculoskeletal (MSK) complications, which can cause substantial discomfort and significantly restrict activity and age-appropriate participation. Current clinical guidelines do not adequately address complication prevention or promotion of participation for this population. Aim: To develop the components of a home-based intervention programme (HBIP) to mitigate musculoskeletal complications in children with severe cerebral palsy (non-or partially ambulant or Gross Motor Function Classification System level III to V), so as to promote inclusion, suitable for use in resource-limited South African (SA) settings. Method: First, a scoping review of the literature was completed to identify potential programme components, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR). Focus group discussions were conducted with 15 caregivers of children with severe CP from a peri-urban setting in KwaZulu Natal, SA, to explore their contextual needs and preferences for a caregiver-delivered intervention. Then, in accordance with the Appraisal of Guidelines Research and Evaluation (AGREE II) tool, the results of the scoping review and focus group discussions were collated as statements and presented to an expert panel to produce a proposal for a HBIP, using a modified Delphi methodology. The panel rated their agreement on a Likert scale, requiring three Delphi rounds for modification and re-iteration until consensus was reached. The final proposed HBIP was returned to the caregivers for comment and approval before being finalised. Results: Fifteen multidisciplinary healthcare experts participated in producing the final set of 62 consensus statements. These statements were grouped into five sections: the importance of the intervention; programme elements; caregiver training; and the implementation and community support mechanisms. Panellists agreed that caregivers should be trained in “24- hour postural management” and “splinting” interventions to prevent musculoskeletal (MSK) deformities, given strategies to assist with activities of daily living (e.g., feeding), and provided with tools for communication, cognitive development, and social participation. Community-based therapists should provide caregiver training and oversight, but community health workers should play a pivotal role in supporting programme implementation. Conclusion: This consensus guideline document provides a detailed and actionable home-based intervention suitable for resource-limited SA settings, to mitigate complications and increase participation opportunities for children with severe CP. Implementation studies are recommended to determine feasibility, acceptability, and efficacy in real-world settings.
dc.identifier.apacitationVan Aswegen, S. R. (2025). <i>Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study</i>. (). ,Faculty of Health Sciences ,Department of Paediatrics and Child Health. Retrieved from http://hdl.handle.net/11427/42734en_ZA
dc.identifier.chicagocitationVan Aswegen, Shayne Robyn. <i>"Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study."</i> ., ,Faculty of Health Sciences ,Department of Paediatrics and Child Health, 2025. http://hdl.handle.net/11427/42734en_ZA
dc.identifier.citationVan Aswegen, S.R. 2025. Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study. . ,Faculty of Health Sciences ,Department of Paediatrics and Child Health. http://hdl.handle.net/11427/42734en_ZA
dc.identifier.ris TY - Thesis / Dissertation AU - Van Aswegen, Shayne Robyn AB - Background: Children living in resource-limited settings (RLS) with severe cerebral palsy (CP) are at considerable risk of developing secondary musculoskeletal (MSK) complications, which can cause substantial discomfort and significantly restrict activity and age-appropriate participation. Current clinical guidelines do not adequately address complication prevention or promotion of participation for this population. Aim: To develop the components of a home-based intervention programme (HBIP) to mitigate musculoskeletal complications in children with severe cerebral palsy (non-or partially ambulant or Gross Motor Function Classification System level III to V), so as to promote inclusion, suitable for use in resource-limited South African (SA) settings. Method: First, a scoping review of the literature was completed to identify potential programme components, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR). Focus group discussions were conducted with 15 caregivers of children with severe CP from a peri-urban setting in KwaZulu Natal, SA, to explore their contextual needs and preferences for a caregiver-delivered intervention. Then, in accordance with the Appraisal of Guidelines Research and Evaluation (AGREE II) tool, the results of the scoping review and focus group discussions were collated as statements and presented to an expert panel to produce a proposal for a HBIP, using a modified Delphi methodology. The panel rated their agreement on a Likert scale, requiring three Delphi rounds for modification and re-iteration until consensus was reached. The final proposed HBIP was returned to the caregivers for comment and approval before being finalised. Results: Fifteen multidisciplinary healthcare experts participated in producing the final set of 62 consensus statements. These statements were grouped into five sections: the importance of the intervention; programme elements; caregiver training; and the implementation and community support mechanisms. Panellists agreed that caregivers should be trained in “24- hour postural management” and “splinting” interventions to prevent musculoskeletal (MSK) deformities, given strategies to assist with activities of daily living (e.g., feeding), and provided with tools for communication, cognitive development, and social participation. Community-based therapists should provide caregiver training and oversight, but community health workers should play a pivotal role in supporting programme implementation. Conclusion: This consensus guideline document provides a detailed and actionable home-based intervention suitable for resource-limited SA settings, to mitigate complications and increase participation opportunities for children with severe CP. Implementation studies are recommended to determine feasibility, acceptability, and efficacy in real-world settings. DA - 2025 DB - OpenUCT DP - University of Cape Town KW - home-based program KW - musculoskeletal complications KW - children KW - cerebral palsy KW - Delphi study LK - https://open.uct.ac.za PY - 2025 T1 - Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study TI - Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study UR - http://hdl.handle.net/11427/42734 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/42734
dc.identifier.vancouvercitationVan Aswegen SR. Developing a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study. []. ,Faculty of Health Sciences ,Department of Paediatrics and Child Health, 2025 [cited yyyy month dd]. Available from: http://hdl.handle.net/11427/42734en_ZA
dc.language.isoen
dc.language.rfc3066eng
dc.publisher.departmentDepartment of Paediatrics and Child Health
dc.publisher.facultyFaculty of Health Sciences
dc.subjecthome-based program
dc.subjectmusculoskeletal complications
dc.subjectchildren
dc.subjectcerebral palsy
dc.subjectDelphi study
dc.titleDeveloping a home-based program to mitigate musculoskeletal complications in children with severe cerebral palsy in resource limited settings: a modified Delphi study
dc.typeThesis / Dissertation
dc.type.qualificationlevelMasters
dc.type.qualificationlevelMPhil
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