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

Van Aswegen, Shayne Robyn

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

Thesis / Dissertation

2025

Abstract

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.