Hayley Ryan1, Rob Heywood1, Oluseyi Jimoh1, Anne Killett1, Peter E Langdon1,2, Ciara Shiggins1,3,4, Karen Bunning1. 1. University of East Anglia, England, UK. 2. University of Warwick, England, UK. 3. Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Melbourne, Australia. 4. School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia.
Abstract
OBJECTIVE: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. METHODS: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. RESULTS: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. CONCLUSIONS: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. PATIENT OR PUBLIC CONTRIBUTION: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.
OBJECTIVE: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. METHODS: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. RESULTS: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. CONCLUSIONS: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. PATIENT OR PUBLIC CONTRIBUTION: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.
Authors: L Diener; L Hugonot-Diener; S Alvino; J P Baeyens; M F Bone; D Chirita; J M Husson; M Maman; F Piette; A Tinker; F von Raison Journal: J Nutr Health Aging Date: 2013-07 Impact factor: 4.075
Authors: Hayley Ryan; Rob Heywood; Oluseyi Jimoh; Anne Killett; Peter E Langdon; Ciara Shiggins; Karen Bunning Journal: Health Expect Date: 2020-11-27 Impact factor: 3.377