The role of paid companions in remote consultations for people with learning disabilities

Introduction

People with learning disabilities die on average 16 years prematurely from preventable deaths. Primary care consultations are the gateway for people with learning disabilities to interact with health services and can play a part in reducing this health inequality.

The ability of healthcare professionals to gain relevant information during a consultation is key to providing good healthcare for people with learning disabilities. Healthcare appointments also serve as important opportunities for identifying wider welfare issues – such as safeguarding concerns. When people with learning disabilities visit a healthcare professional in primary care (a GP or nurse, for example), they are often accompanied by a paid ‘companion’ who supports their interaction with the doctor. Frequently, a member of the social care staff team or a personal assistant fulfils the role of the companion. It can be hard for companions to know exactly what their role should be – when to support the person with a learning disability to speak for themselves and when the companion may need to speak to the healthcare professional directly in order to provide important information. This situation can be further complicated by the fact that some companions may know more than the person with learning disabilities themselves about their health issues (e.g., details of medication, undisclosed health concerns etc). The situation can also be difficult for healthcare professionals, who may be unsure how to balance their interactions between the person with learning disabilities and the companion.

Understanding the role a paid companion plays in medical consultations for people with learning disabilities is therefore vital. The need for research on this topic has become urgent due to rapid and widespread adoption of ‘remote’ healthcare consultations, via telephone and video calls. However, there is no research on the role of the paid companion in healthcare consultations or how this role may be affected by remote consultations.

Methods

This project will work with people with learning disabilities, social care staff and healthcare professionals to record and analyse 30 remote healthcare consultations involving a person with learning disabilities being supported by a paid companion. Consultations will be analysed using conversation analysis, a way of studying social interactions in real world situations. The project aims to include planned and unplanned consultations to compare how these different types of consultations impact communication and role of the companion. Five focus groups (two with people with learning disabilities, two with social care staff, one with representatives from social care provider organisations) will also be conducted to explore experiences of the role of the companion, and suggestions for supporting the role.

The research findings will be used to develop guidance on how the role of the companion can best support positive healthcare outcomes for people with learning disabilities in remote consultations. Targeted guidance will be developed for people with learning disabilities, social care staff and healthcare professionals. The guidance will be presented in an accessible summary, publications, a webinar and through short videos created by Misfits, a learning disability theatre company who are co-applicants on this study.