The extent and nature of need for mealtime support among adults with intellectual disabilities

• Published in: Journal of intellectual disability research 2012-04, Vol.56 (4), p.382-401
• Main Authors: Ball, S. L., Panter, S. G., Redley, M., Proctor, C.-A., Byrne, K., Clare, I. C. H., Holland, A. J.
• Format: Article
• Language: English
• Subjects: Adult; Adult and adolescent clinical studies; Adults; Aged; Biological and medical sciences; Carers; challenging behaviour; Cross-Sectional Studies; Disability Evaluation; Dysphagia; Eating; Eating Disorders; Eating Habits; Emotional Disturbances; England; England (Cambridgeshire); Enteral Nutrition - statistics & numerical data; Esophagus; Feeding and Eating Disorders - diagnosis; Feeding and Eating Disorders - epidemiology; Feeding and Eating Disorders - rehabilitation; Feeding Behavior; Feeding Methods; Female; Food Preferences; Gastroenterology. Liver. Pancreas. Abdomen; Health risk assessment; health risks; Humans; Incidence; Intellectual deficiency; intellectual disability; Intellectual Disability - diagnosis; Intellectual Disability - epidemiology; Intellectual Disability - rehabilitation; Interdisciplinary Approach; Learning disabilities; Learning disabled people; Male; Meals; mealtime support; Medical sciences; Mental Disorders - diagnosis; Mental Disorders - epidemiology; Mental Disorders - rehabilitation; Mental Retardation; Middle Aged; Mobility Limitation; Needs; Needs Assessment - statistics & numerical data; Nutrition; Other diseases. Semiology; Prevalence; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Risk Factors; Services; Specialists; Support workers; Visual Impairments; Young Adult
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2011.01488.x

Background  For many adults with an intellectual disability (ID), mealtimes carry significant health risks. While research and allied clinical guidance has focused mainly on dysphagia, adults with a range of physical and behavioural difficulties require mealtime support to ensure safety and adequate nutrition. The extent of need for and nature of such support within the wider ID population has yet to be reported. Methods  In this study, we have estimated the prevalence of need for mealtime support among people with ID in the UK, using a population of 2230 adults known to specialist ID services (in Cambridgeshire, UK, total population 586 900). In a sample (n = 69, aged 19 to 79 years, with mild to profound ID), we characterised the support provided, using a structured proforma to consult support workers and carers providing mealtime support, and health and social care records. Results  Mealtime support was found to be required by a significant minority of people with ID for complex and varied reasons. Prevalence of need for such support was estimated at 15% of adults known to specialist ID services or 56 per 100 000 total population. Within a sample, support required was found to vary widely in nature (from texture modification or environmental adaptation to enteral feeding) and in overall level (from minimal to full support, dependent on functional skills). Needs had increased over time in almost half (n = 34, 49.3%). Reasons for support included difficulties getting food into the body (n = 56, 82.2%), risky eating and drinking behaviours (n = 31, 44.9%) and slow eating or food refusal (n = 30, 43.5%). These proportions translate into crude estimates of the prevalence of these difficulties within the known ID population of 11.9%, 6.6% and 6.4% respectively. Within the sample of those requiring mealtime support, need for support was reported to be contributed to by the presence of additional disability or illness (e.g. visual impairment, poor dentition and dementia; n = 45, 65.2%) and by psychological or behavioural issues (e.g. challenging behaviour, emotional disturbance; n = 36, 52.2%). Conclusions  These findings not only highlight the need for a multidisciplinary approach to mealtime interventions (paying particular attention to psychological and environmental as well as physical issues), but also signal the daily difficulties faced by carers and paid support workers providing such support and illustrate their potentially crucial role in managing the