RESUMEN
BACKGROUND: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention. METHODS: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation. RESULTS: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families. CONCLUSION: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.
RESUMEN
BACKGROUND: Children with disabilities may be particularly vulnerable to malnutrition, as a result of exclusions and feeding difficulties. However, there is limited evidence currently available on this subject. METHODS: A population-based case-control study was conducted in Turkana County, Kenya, between July and August 2013. Key informants in the community identified children aged 6 months to 10 years who they believed may have a disability. These children were screened by a questionnaire (UNICEF-Washington Group) and assessed by a paediatrician to confirm whether they had a disability and the type. Two controls without disabilities were selected per case: A sibling control (sibling nearest in age) and a neighbourhood control (nearest neighbour within one year of age). The caregiver completed a questionnaire on behalf of the child (e.g. information on feeding, poverty, illness, education), and anthropometric measures were taken. We undertook multivariable logistic and linear regression analyses to estimate the relationship between disability and malnutrition. RESULTS: The study included 311 cases with disabilities, 196 sibling controls and 300 neighbour controls. Children with disabilities were more likely to report a range of feeding difficulties. They were 1.6-2.9 times more likely to have malnutrition in comparison to neighbour controls or family controls, including general malnutrition (low weight for age), stunting (low height for age), low body mass index (BMI) or low mid upper arm circumference (MUAC) for age. Children with disabilities were almost twice as likely to have wasting (low weight for height) in comparison to neighbour controls (OR = 1.9, 95% CI 1.1-3.2), but this difference was not apparent compared with siblings (OR = 1.5, 95% CI 0.8-2.7). Children with disabilities also faced other exclusions. For instance those aged 5+ were much more likely not to attend school than neighbour controls (OR = 8.5, 95% CI 4.3-16.9). CONCLUSIONS: Children with disabilities were particularly vulnerable to malnutrition, even within this area of food insecurity and widespread malnutrition. Efforts need to be made to include children with disabilities within food supplementation programmes, and school based programmes alone may be inadequate to meet this need. Exclusion of children with disabilities from education is also a priority area to be addressed.
