Experiences of Adults with Intellectual Disability and Dysphagia
Research type
Research Study
Full title
What are the experiences of adults with Intellectual Disability and Dysphagia? An exploratory study.
IRAS ID
233048
Contact name
Rachael Kasch
Contact email
Sponsor organisation
coventry university
Duration of Study in the UK
0 years, 8 months, 17 days
Research summary
The research question I want to address is "What are the experiences of adults with intellectual disability (ID) living with Dysphagia?" There are approximately 1.5 million people in the UK with ID (Emerson et al. 2011). Epidemiological studies indicate a 7-8% population increase by 2020 (Emerson and Hatton 2008). Dysphagia is recognised as one of the five key areas of risk for people with ID (National Patient Safety Agency 2004). Dysphagia is defined as “difficulty in swallowing or impairment in the movement of swallowed material from the pharynx to the stomach” (Logemann 1998: 9). Dysphagia can lead to impaired quality of life, malnutrition, dehydration, aspiration, choking and death (The Royal College of Speech and Language Therapists 2009). The significance of dysphagia for adults with ID is evident in the Mencap report “Death by Indifference” (Mencap 2007). Dysphagia was a contributing factor to all deaths in the report. Speech and Language Therapy (SLT) provision for adults with ID is a new and developing area of professional practice (RCSLT 2009). Consequently the evidence base for SLT intervention with adults with ID is limited.
I will recruit adults with ID who have received a Dysphagia service from Birmingham Community HealthCare Trust (BCHC) between 2007 and 2017 who have the mental capacity to consent to participate in the study. Participants will be 19 years of age and over and have a diagnosis of Dysphagia. Following familiarisation sessions, I will carry out 1:1 semi structured interviews facilitated by photo elicitation to find out individuals' experiences of living with Dysphagia. The participants will choose where the familiarisation sessions and interviews take place. Prior to interviews, participants will be provided with a disposable camera and asked to take photographs which represent what it is like living with Dysphagia. The photographs will be used to guide the interview.
REC name
Social Care REC
REC reference
17/IEC08/0049
Date of REC Opinion
8 Dec 2017
REC opinion
Further Information Favourable Opinion