Bringing 'patient voice' into psychological formulations of in-patients with intellectual disabilities, autism spectrum disorder and severe challenging behaviours: report of a service improvement pilot

• Published in: British journal of learning disabilities 2014-09, Vol.42 (3), p.177-184
• Main Authors: Rowe, Gareth, Nevin, Helen
• Format: Article
• Language: English
• Subjects: Anxiety; Autism; Autism Spectrum Disorders; Behavior Disorders; Case Studies; challenging behaviour; communication; Communication Problems; Developmental disabilities; Intervention; learning (intellectual) disabilities; Meetings; Mental Retardation; Mild Intellectual Disability; nursing; Participation; Patients; Pervasive Developmental Disorders; profound and complex learning disabilities; Quality of life; Residential Programs; Severe Disabilities; Severe Intellectual Disability; Teamwork
• ISSN: 1354-4187; 1468-3156
• DOI: 10.1111/bld.12026

Accessible summary It is important to listen to patients' views when they are in hospital. Sometimes it is difficult for staff to understand what people with intellectual disabilities are saying. This project tried to include the views of all the patients on an autism services ward. Some people were easier to understand than others but we managed to listen to everybody. Summary This is a report of a service improvement pilot project undertaken at an inpatient autism service for adults with intellectual disabilities and severe challenging behaviours. Within the service, a key facet of the care pathway was the use of a biopsychosocial case formulation. Formulation meetings were led by psychology and involved a full multidisciplinary team and external representation. However, routine invitation of patients was not appropriate due to anxiety and complex communication difficulties. Therefore, the service was looking for alternative ways to incorporate the voices of patients into formulation. This report presents the case studies of four individual patients who were chosen because together they were indicative of the patient profile across the service. The study has demonstrated that it is possible to include patients' voices in their psychological formulation. For those with mild intellectual disabilities and mild autism spectrum disorder, this has been simple and extremely fruitful. For those with severe intellectual disability and severe autism spectrum disorder this has been more resource intensive and the results have been more tentative. Despite this, it has been demonstrated that it is possible to include the voices of all patients to some extent.