Children living with disabilities are neglected in severe malnutrition protocols: a guideline review

Abstract

PurposeChildren 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.MethodsNational 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.Results71 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.ConclusionChildren 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.

Health equity considerations in guideline development: a rapid scoping review

“…Disadvantaged groups should be considered when identifying the target audience of a proposed guideline 55 …”

Nutritional care for children with feeding difficulties and disabilities: A scoping review

“…Specific interventions should include capacity strengthening and addressing misperceptions and biases among health workers and revising guidelines and care protocols related to nutrition and health to include appropriate guidance and support for children with feeding difficulties. Given high rates of wasting and early mortality due to malnutrition among children with disabilities, an opportunity exists to provide guidance on children with disabilities in the forthcoming revision of wasting guidelines [44]. However, the Global Action Plan on Wasting contains only very brief mention of children with disabilities [60].…”

“…One respondent added that health workers frequently do not recognize or address sensory-related feeding problems, such as selective eating or oral hypersensitivity (Interview with a SLT). A review found that better evidence is needed on identifying and managing children with disabilities in malnutrition programs [44], which was supported by respondents (see Box 1). Another report found that "the nutrition sector needs to provide program staff with better guidance and training on how to manage children with neurodisabilities.…”

“…Additionally, a number of our respondents mentioned that even when children with disabilities are included in programming, data collection is usually not disaggregated to look at how outcomes might differ for them. A review of 71 national and international guidelines on malnutrition found that while most mention disability, only three had specific sections providing guidance on disability [44].…”

“…Feeding difficulties can increase children's risk of wasting (low weight-for-height), and children with disabilities and wasting have a higher risk of death than wasted children without a disability. Despite this, a review of guidelines for wasting treatment revealed that few global or country-specific health systems provide guidance on treating wasting in children with disabilities [44].…”