Lutgard Musiime is one of four SPOON Nutritional Technical Officers based in Uganda, and the guest author of the blog post below. Read on for an update in her words about our policy and advocacy work in Uganda.
For years, children with feeding difficulties have gone largely unseen in nutrition programming. This year, Uganda took an important step toward changing that. During this year’s World Breastfeeding Week, Uganda launched three important nutrition guidelines, including the Nutrition Guidelines for Children with Feeding Disabilities.
The need is vast
For SPOON, this was much more than the launch of another guideline. It represented the culmination of a journey that began in 2023, when it became clear that there was need to address a significant gap in how health workers identify and support children experiencing feeding difficulties. At the launch, Senior Nutritionist at the Ministry of Health, Laura Ahumuza, helped put the magnitude of the issue into perspective. Globally, an estimated 1.3 billion people have a disability; over 250 million of these are children. Up to 80% of children with disabilities may experience feeding difficulties, and these children are at substantially greater risk of malnutrition, including being underweight and stunted.
How are feeding and disability connected?
According to the National Nutrition Guidelines for Children with Feeding Disabilities, children with feeding difficulties are at risk of inadequate food intake leading to poor weight gain, failure to thrive, and/or delayed milestones. Feeding difficulties affect a child's ability to eat in many different ways. Physical and functional limitations can affect positioning, self-feeding, and access to food, for example in congenital conditions and neurodevelopmental disabilities. There cannot be a one-size-fits-all approach to feeding children with disabilities.
Individualized assessments to reduce malnutrition
The new guidelines emphasize the importance of individualized assessment and appropriate nutrition support, recognizing that every child's ability, challenges, and nutritional needs are different. The overall goal for these guidelines is to reduce all forms of malnutrition among children with feeding difficulties in Uganda and ensure that they receive optimal nutrition support. The development of these guidelines has been a collaborative effort, with contributions from World Vision, SPOON, UNICEF, and the MIYCAN technical team of the Nutrition Division at the Ministry of Health, among others.
Following the launch, SPOON had the privilege of joining the facilitation team for the first Training of Trainers of the guidelines in the dissemination series held at Jinja Nile Resort. We worked with pediatricians under the Local Maternity and Neonatal systems and senior nutritionists from selected referral hospitals across the country to begin translating the guidelines into practice. This is the part that means the most to us, reflecting our labor.
Collaborating with partners
Since 2019, through our work with the Association of Religious in Uganda (ARU) through their program, Catholic Care for Children in Uganda (CCCU), we have worked in child care institutions, training caregivers and staff on how to better care for and feed children with disabilities. More recently, we have expanded our work into health facilities, supporting health workers to strengthen their capacity to identify and respond to feeding difficulties. One message we continue to emphasize is the importance of early identification. Feeding difficulties should not be an afterthought. We need to routinely consider feeding when assessing children, particularly those at higher risk of feeding challenges.
What’s next?
The launch of these guidelines is therefore not the end of the journey. It is the beginning of a new chapter. A guideline only changes lives when it reaches the health worker sitting across from a caregiver, the clinician assessing a child, and ultimately the family trying to figure out how to help their child eat, grow, and thrive. There is still much work to do to ensure these guidelines are implemented, understood, and accessible across Uganda.
But now, we are taking a moment to celebrate. Because something that we have been advocating for, training for, researching, and working toward for years is now part of Uganda's national guidance. Children with disabilities deserve to be seen in our nutrition programs. Their feeding needs deserve to be understood, and their families deserve the right support.