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  • Home
  • Resources
    • Designing inclusive studies >
      • Legal frameworks
      • Outcome measures
      • Participatory involvement
    • Research ethics
    • Communication and capacity
    • Consent and consultation
    • Research conduct
  • CONSULT Training
  • INCLUDE Impaired Capacity to Consent Framework
  • CONSULT SWAT
  • Advance research planning
  • OPTIMISE recommendations
  • Publications
  • Blog
  • Contact
Capacity consent research
  • Home
  • Resources
    • Designing inclusive studies >
      • Legal frameworks
      • Outcome measures
      • Participatory involvement
    • Research ethics
    • Communication and capacity
    • Consent and consultation
    • Research conduct
  • CONSULT Training
  • INCLUDE Impaired Capacity to Consent Framework
  • CONSULT SWAT
  • Advance research planning
  • OPTIMISE recommendations
  • Publications
  • Blog
  • Contact

​Publications

This page collates recent papers from the CONSULT project and other relevant publications around the inclusion of adults with impaired capacity to consent. 

Please let us know about any other useful publications to include using the Contact page.

Journal articles from CONSULT

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CONSULT publication
Unpacking the 'black box of horrendousness: a qualitative exploration of the barriers and facilitators to conducting trials involving adults who lack capacity to consent to trials
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CONSULT publication
Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning (CONSULT-ADVANCE Study)
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CONSULT publication
Recruitment interventions for trials involving adults lacking capacity to consent: methodological and ethical considerations for designing Studies Within a Trial (SWATs)
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CONSULT publication
Development of a measure to assess the quality of proxy decisions about research participation on behalf of adults lacking capacity to consent: the Combined Scale for Proxy Informed Consent Decisions (CONCORD scale)
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CONSULT publication
Development of a decision support intervention for family members of adults who lack capacity to 
​consent to trials
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CONSULT publication
Research involving adults lacking capacity to consent: a content analysis of participant information sheets for consultees and legal representatives in England and Wales
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CONSULT publication
An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent
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CONSULT publication
Development of a core outcome set for evaluating interventions to enhance trial participation decisions on behalf of adults who lack capacity to consent
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CONSULT publication
Recommendations from CONSULT-ENABLE Study to help address barriers to conducting trials with adults with impaired capacity to consent
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Linked to CONSULT
Improving the inclusion of an under-served group in trials: development and implementation of the INCLUDE Impaired Capacity to Consent Framework
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CONSULT publication
 A qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)
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Linked to CONSULT
Report from Churchill Fellowship exploring international perspectives on advance research planning, with recommendations for UK

Other recent relevant publications

Ageing and dementia

Consent recommendations for research and international data sharing involving persons with dementia

Feasibility of a human factors work-system designed recruitment method for hospitalized persons with dementia

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​​Misfitting the Research Process: Shaping Qualitative Research “in the Field” to Fit People Living With Dementia

Older person's and their caregivers' perspectives and experiences of research participation with impaired decision-making capacity: a scoping review ​


​Partnering with older people as peer researchers

Uncertainties When Applying the Mental Capacity Act in Dementia Research: A Call for Researcher Experiences

Nothing About us Without us: Research Methods Enabling Participation for Aged Care Residents Who Have Dementia

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Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme


​Supporting Inclusion and Participation for People Living With Dementia: Ethnographic and Participatory Research Methods

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A human rights-based framework for qualitative dementia research

Considerations for legal, ethical, and effective practice in dementia research​
Care homes
Older care-home residents as collaborators or advisors in research: a systematic review

How nurses can support the inclusion in research of older people who lack capacity to consent


Conducting a Randomized Controlled Trial in Care Homes: The Challenges of Recruiting Residents Who Lack Capacity to Consent

​​Supporting autonomy of nursing home residents with dementia in the informed consent process

​The Opportunities and Challenges of Conducting Observational Research in Care Homes: What a Researcher Brings, Does, and Leaves Behind?
Community
The cost of community research—recruiting community-dwelling participants to a feasibility primary care cluster randomised controlled trial
​Critical care
Effectiveness of participant recruitment strategies for critical care trials: A systematic review and narrative synthesis
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Perspectives Study: Guidance to inform recruitment and consent in studies involving critically ill patients

Strategies to enhance recruitment and consent to intensive care studies: a qualitative study with researchers and patient–public involvement contributors

Guidance to inform research recruitment processes for studies involving critically ill patients

Ethical considerations in research involving ICU patients who lack capacity: navigating the updated Helsinki Declaration
End of life and palliative care
​Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement
Learning disabilities
Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research

Participatory research with men with learning disability: informed consent

Process evaluation in intellectual disability research: A case study and the need for adaptation of frameworks
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Supporting informed clinical trial decisions: Results from a RCT evaluating a digital decision support tool for those with intellectual disability

Voiceless subjects? Research ethics and persons with profound intellectual disabilities
Legal frameworks
A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales: Recruitment of adults with capacity and communication difficulties
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Lost Voices in Research: Exposing the Gaps in the Mental Capacity Act 2005

​The UK Mental Capacity Act and consent to research participation: asking the right question​

Inclusion of adults with conditions that have the potential to affect capacity and or communication in research: triangulation from a mixed-methods study of current practice and values across multiple stakeholders
Public involvement
The ethics of patient and public involvement across the research process: towards partnership with people with aphasia

In it for the long haul: a reflective account of collaborative involvement in aphasia research and education
Surgical trials
Embedding qualitative research in randomised controlled trials to improve recruitment: findings from two recruitment optimisation studies of orthopaedic surgical trials
Aphasia
Creating a novel approach to discourse treatment through coproduction with people with aphasia and speech and language therapists

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People with Aphasia: Capacity to Consent, Research Participation and Intervention Inequalities
STROKE
Brief Consent Methods Enable Rapid Enrollment in Acute Stroke Trial: Results From the TICH-2 Randomized Controlled Trial
MENTAL CAPACITY ASSESSMENT
‘Do I have the capacity to make capacity judgements?’ Researcher reflections from a person-centred dementia support study
EMERGENCY RESEARCH
Trials using deferred consent in the emergency setting: a systematic review and narrative synthesis of stakeholders’ attitudes

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