Balancing safety and enjoyment: current practice when recommending tastes for people with intellectual disabilities who are non-orally fed

Abstract

Eating and drinking problems are common among people with intellectual disabilities. Having a compromised swallow or being at risk of inadequate nutrition are two reasons for introducing non-oral feeding. Such procedures involve the creation of an external opening for food and drink to be delivered directly into the stomach through a tube. In recent years maintenance of the swallow and quality of life issues have led to introduction of small amounts of food and drink (oral tastes) for people who are non-orally fed. Little evidence exists about the reasoning used to inform this decision or the types of oral tastes offered. This study aims to address these omissions. An exploratory survey, distributed via email, was used to gather information from speech and language therapists and dietitians about their current practice and their decision-making processes when offering oral tastes to people who are non-orally fed. Data presented here reflect the responses from respondents working primarily with people with intellectual disabilities (55 out of 158 respondents). Oral tastes were being offered and clinical decision-making around this centred on balancing the wellbeing and wishes of the person with intellectual disabilities and their carers with the risks to wellbeing inherent in implementing and supporting an oral taste programme.