Impact Case: Consent Support Tool

Dr Rebecca Palmer and Mark Jayes [authors]

Introduction

It is important that researchers working with groups of people who may have communication disorders are supported to identify the different communication abilities and difficulties of each individual, in order to make an informed judgement about how best to provide project information, conduct the consent process and support the individual with participation in the research activity.

What is the Consent Support Tool?

The Consent Support Tool seeks to assist professionals to identify types of support most likely to help each individual understand the information as fully as possible. For people with more severe aphasia, the tool can be used to identify those individuals who are unlikely to be supported to understand adapted information sufficiently to make their own independent decision.Support Tool

How does it do that?

The tool achieves this in three ways:

  1. A screening test helps the professional to identify the profile of communication abilities and difficulties of the individual
  2. Ideas on how to communicate best with the individual given his communication profile are suggested
  3. Styles of information most consistent with the individual’s language profile are identified to help the professional prepare and provide information in the most useful way to support that individual to understand the information necessary to make an informed decision.

How long has it been around?

The CST has been developed since 2009 by two specialist speech and language therapists for research purposes and the predictive validity of the CST was tested by Jayes and Palmer (2014) suggesting good predictive validity.

Over 180 health professionals have been trained to use the CST for research and clinical practice and was endorsed by the UK Forum for Stroke Training in 2011.

Courses on obtaining informed consent from people with communication disorders using the CST have been provided to groups of health researchers and professionals through the:

  • Trent NIHR Stroke Research Network
  • Yorkshire NIHR Stroke Research Network
  • Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South Yorkshire, Nottinghamshire,
  • East Anglia NIHR Primary Care Research Network
  • Association of Physiotherapists in Neurology (ACPIN) and speech and language therapy special interest groups between 2009 and 2012.

The CST is now being used in a number of research studies. These include:

  • The multicentre study of the computer therapy for aphasia (Big CACTUS) funded by the National Institute of Health Research’s Health Technology Assessment programme (Palmer et al 2015).
  • Behavioural Activation Therapy for depression (BEADS) funded by NIHR Health Technology Assessment programme (NIHR 2016)
  • Why patients do not receive the recommended amount of active therapy on stroke units (REACT) funded by NIHR Research for Patient Benefit programme (Clarke et al 2015).
  • Fryer (2013) The meaning and experience of participation in stroke survivors.
  • Harrison et al (2013) Patients and carers’ experiences of gaining access to acute stroke care.
  • Harrison and Palmer (2015) Exploring patient and public involvement in stroke research.

There have been 9 publications reporting the concept, feasibility, validation and use to date and is available from May 2016 for purchase from Napier Hill Press as: Consent support tool: including people with communication disorders in health research studies.

“The Consent Support Tool is easy to use and has helped researchers feel more confident in gaining consent from people with aphasia.”

Dr Shirley Thomas Lecturer in Rehabilitation Psychology University of Nottingham