Follow-on study refining a decision aid for family members making decisions about research on behalf of someone lacking capacity to consent (PI @VickyLShepherd)
Cardiff, Wales
Joined November 2017
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Latest DECISION Study paper reports difficult balance for families making decisions about research on behalf of someone who lacks capacity to consent. DECISION 2 Study now exploring their views about a decision support tool that has been developed to help
jme.bmj.com/content/early/20…
The research from @DECISION_Study which explored the acceptability & use of a decision support tool for consultees/legal reps will continue to be developed as part of new CONSULT project to evaluate the effectiveness of the intervention. Follow @consult_consent for more updates
A summary of @DECISION_Study results have been added to @CTRCardiffUni website cardiff.ac.uk/centre-for-tri… & shared with all those who kindly took part. Next stage is to refine & test the decision support tool as part of CONSULT project funded by @ResearchWales More details to come!
Interviews for @DECISION_Study now completed. Many thanks to those who kindly took part & to @beatdementia for supporting recruitment. Analysis is underway, & exciting news about next steps for this work on research involving adults with impaired capacity to consent to follow ...
DECISION2 retweeted
Join Dementia Research @beatdementia is a hugely important resource to link researchers & people wanting to help research. Its been invaluable for @DECISION_Study recruitment, & participants have enjoyed taking part from the comfort & safety of their homes. Please sign up!
In Nov 2019, 155 people living with #Dementia registered on Join Dementia Research, in November 2020 it was 50 people! More people without dementia are registering, but even that is around 1/2 as many as 2019.
To sustain recruitment to studies, we urgently need people to sign-up
It's 3 years since @DECISION_Study joined twitter so an opportunity to reflect on what we've learned from talking to families of people with conditions such as dementia about #research decisions made on their behalf 1/4 @CTRCardiffUni cardiff.ac.uk/centre-for-tri…
Families worried about whether it was the ‘right’ or ‘wrong’ decision. They wanted to do what was best for the person but balance this with their perceived wishes/preferences – although preferences about research are rarely discussed 3/4
jme.bmj.com/content/early/20…
Families wanted greater support & we developed a decision support tool to help. In DECISION 2 (funded by @wellcometrust ISSF) we're interviewing family members to ask their views about it ahead of future testing. Discussing preferences may also help /end journals.sagepub.com/doi/10.…
DECISION2 retweeted
@DECISION_Study explored one of the challenges to including people with impaired capacity to consent in research - how family members make decisions about participation - as part of @NIHRcommunity fellowship funded by @ResearchWales
#TrialConductResearch
cardiff.ac.uk/centre-for-tri…
We are looking for people to take part in our new @CTRCardiffUni study. Are you a carer for a family member living with dementia? Could you take part in an online interview to test a decision support booklet? If so, please see more info at bit.ly/302afug and get in touch
*NEW STUDY* Are you a #carer for a family member with #dementia? Are you interested in taking part in our @CTRCardiffUni study testing a decision support tool to help make decisions about research on their behalf? See bit.ly/302afug for details 1/2
For information about the background to the @DECISION_Study study see @CTRCardiffUni website: cardiff.ac.uk/centre-for-tri…
For an animated video see: youtu.be/uHg3SydNXAI
Or contact @VickyLShepherd for more info 2/2
DECISION2 retweeted
If you want to make sense of why the UK government are making the decisions they are making with regard to coronavirus: they have prepared over the last decade for a pandemic (focusing on pandemic flu) and the strategy and evidence based is public
gov.uk/guidance/pandemic-flu
DECISION2 retweeted
‘He would probably want to help people if he could’: making decisions about research on behalf of people living with #dementia via @VickyLShepherd @DECISION_Study bgs.org.uk/blog/%E2%80%98he-…
DECISION2 retweeted
The DECISION study by @VickyLShepherd
Family members’ experiences of informed consent & proxy decision making for research involving adults lacking capacity.
Results summary video and links to 2 published papers -
cardiff.ac.uk/centre-for-tri…
@ResearchWales
@CR_UK
@CUBLSResearch
DECISION2 retweeted
The DECISION Study - completed as part of my NIHR Fellowship @ResearchWales - has now been updated on @CTRCardiffUni website to include the lay summary, first publication of results & animation of findings cardiff.ac.uk/centre-for-tri… @DECISION_Study
First paper from @DECISION_Study exploring families' experiences acting as consultee/legal representative for research now published in @Age_and_Ageing doi.org/10.1093/ageing/afz11… & animation of findings on You Tube bit.ly/2OxzRcX
DECISION2 retweeted
Essential work and an opportunity to help shape it here 👇🏻
We are looking for families of people living with dementia, & researchers (esp. research nurses) who recruit people with impaired capacity, to join an event on 25th March in Cardiff to help develop a tool to support decision-making about research @PRIMECentre @CTRCardiffUni
We are looking for families of people living with dementia, & researchers (esp. research nurses) who recruit people with impaired capacity, to join an event on 25th March in Cardiff to help develop a tool to support decision-making about research @PRIMECentre @CTRCardiffUni