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Children living with disabilities are neglected in severe malnutrition protocols: a guideline review
Magdalena Engl1, Paul Binns2, Indi Trehan3
1Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London, UK Magdalena.Engl1@alumni.lshtm.ac.uk.
Insights
Children with disabilities are often overlooked in severe acute malnutrition (SAM) guidelines. Current guidelines lack specific recommendations, hindering effective treatment and support for this vulnerable population.
Area of Science:
- Public Health
- Pediatrics
- Nutrition Science
Background:
- Children with disabilities face a heightened risk of malnutrition.
- Existing malnutrition treatment programs and research have historically marginalized this group.
- Current World Health Organization (WHO) guidelines for severe acute malnutrition (SAM) acknowledge disability but lack specific treatment details.
Purpose of the Study:
- To assess the extent to which children living with disabilities are included in national and international severe acute malnutrition (SAM) guidelines.
- To identify gaps and barriers in current guidelines regarding the management of malnutrition in children with disabilities.
Main Methods:
- A comprehensive review of national and international SAM guidelines available in multiple languages.
- Scoping interviews with key informants involved in guideline development to understand barriers.
- Exclusion of regional or specialized protocols to focus on general SAM guidelines.
Main Results:
- Out of 71 reviewed guidelines (63 national, 8 international), 85% mentioned disability, but often superficially.
- Only 4% of guidelines included a specific section for children with disabilities, with most lacking practical guidance.
- Interviews revealed barriers such as medical complexity, resource limitations, and lack of evidence for tailored interventions.
Conclusions:
- Children with disabilities are significantly under-recognized and inadequately supported in current severe acute malnutrition (SAM) guidelines.
- There is an urgent need for more robust evidence to guide the identification and management of malnutrition in children with disabilities.
- Inclusion of specific recommendations for this population in future WHO malnutrition guideline updates is crucial.
Purpose:
Children living with disabilities are at high risk of malnutrition but have long been marginalised in malnutrition treatment programmes and research. The 2013 WHO guidelines for severe acute malnutrition (SAM) mention disability but do not contain specific details for treatment or support. This study assesses inclusion of children living with disabilities in national and international SAM guidelines.
Methods:
National and international SAM guidelines available in English, French, Spanish or Portuguese were sourced online and via direct enquiries. Regional guidelines or protocols subspecialising in a certain patient group (eg, people living with HIV) were excluded. Eight scoping key informant interviews were conducted with experts involved in guideline development to help understand possible barriers to formalising malnutrition guidance for children living with disabilities.
Results:
71 malnutrition guidelines were reviewed (63 national, 8 international). National guidelines obtained covered the greater part of countries with a high burden of malnutrition. 85% of guidelines (60/71) mention disability, although mostly briefly. Only 4% (3/71) had a specific section for children living with disabilities, while the remaining lacked guidance on consistently including them in programmes or practice. Only one guideline mentioned strategies to include children living with disabilities during a nutritional emergency. Most (99%,70/71) did not link to other disability-specific guidelines. Of the guidelines that included children living with disabilities, most only discussed disability in general terms despite the fact that different interventions are often needed for children with different conditions. Interviews pointed towards barriers related to medical complexity, resource constraints, epidemiology (eg, unrecognised burden), lack of evidence and difficulty of integration into existing guidelines.
Conclusion:
Children living with disabilities are under-recognised in most SAM guidelines. Where they are recognised, recommendations are very limited. Better evidence is urgently needed to identify and manage children living with disabilities in malnutrition programmes. More inclusion in the 2022 update of the WHO malnutrition guidelines could support this vulnerable group.
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