Development and Validation of a Questionnaire to Measure Feeding Challenges and Nutritional Problems Associated With Long-Term Enteral Nutrition Among Children With Disabilities

Sara Zaher,1 Sarah M Ajabnoor2,3 1Clinical Nutrition Department, College of Applied Medical Sciences, Taibah University, Madinah, Kingdom of Saudi Arabia; 2Department of Clinical Nutrition, Faculty of Applied Medical Sciences, King Abdulaziz University, Jeddah, Saudi Arabia; 3Food, Nutrition and Lifestyle Unit, King Fahd Medical Research Centre, King Abdulaziz University, Jeddah, Saudi ArabiaCorrespondence: Sara Zaher, Clinical Nutrition Department, College of Applied Medical Sciences, Taibah University, P.O. Box 344, Madinah, 42353, Kingdom of Saudi Arabia, Tel +966565592420, Email [email protected]; [email protected]: Children with disabilities receiving long-term enteral nutrition (EN) frequently struggle with feeding issues. This study aims to develop and validate a questionnaire to assess tube feeding challenges and nutritional problems among this group of children.Methods: In this survey-based study, data was collected via an online survey of mothers or caregivers of children with disabilities receiving long-term EN. The questionnaire was prepared following a literature analysis of nasogastric, gastrostomy and jejunostomy-related complications in children. The validation of the tool was conducted with three experts in the field, followed by its translation into Arabic. It was then pilot-tested on six mothers of children with disabilities who receive long-term EN. The reliability of the questionnaire was assessed using Cronbach’s-alpha coefficient and measurement of test–retest inter-rater reliability.Results: Twenty-four children were included in this study; their median age was 4.7 years. The value of Cronbach’s-alpha (α = 0.742) suggested good reliability of the tool items among the study sample. The test-retest reliability assessed by correlation coefficients showed a strong correlation for most items; the r-value of the overall tool was 0.922, P < 0.001.Conclusion: Strong test–retest reliability was demonstrated by the developed EN feeding problem questionnaire. Suggesting that the questionnaire is reliable and valid for utilisation in children with disabilities.Keywords: feeding problems, enteral nutrition, disability, children