Barriers to caregiver compliance with eating and drinking recommendations for adults with intellectual disabilities and dysphagia

Abstract

Background: There is scant research on the subject of dysphagia and people with intellectual disabilities. This study explores the barriers which caregivers believe make following Speech and Language Therapists' (SLTs) dysphagia management strategies more difficult.

Method: Semi-structured open-ended interviews were conducted with 46 caregivers who supported 40 intellectually disabled adults with dysphagia.

Results: Caregivers perceived particular difficulties in modifying food and drinks to safe consistencies, achieving the agreed positioning during mealtimes, and in using support and prompting strategies. Problematic support and prompting strategies included difficulties with pacing correctly; facilitating people to adequately relax and concentrate; observing and prompting people to pace suitably and take safe amounts of food and drink in each mouthful. Additional barriers identified included time pressures, staff turnover and insufficient reviewing of SLT management strategies by caregivers.

Conclusions: Findings suggest that additional training and monitoring is required to ensure caregivers are aware of their role and responsibility in promoting safe oral intake for adults with dysphagia and intellectual disabilities. Ongoing support is suggested for people with intellectual disabilities and dysphagia to help them understand the reasoning behind management strategies.