DECISION2

Follow-on study refining a decision aid for family members making decisions about research on behalf of someone lacking capacity to consent (PI @VickyLShepherd)

[DECISION2 @DECISION_Study]

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
https://t.co/zKbgZ2t0jQ

[DECISION2 @DECISION_Study]

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

[DECISION2 @DECISION_Study]

A summary of @DECISION_Study results have been added to @CTRCardiffUni website https://t.co/h5y4CS2pqJ & 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!

[DECISION2 @DECISION_Study]

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 ...

[Victoria Shepherd @VickyLShepherd]

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!

[DECISION2 @DECISION_Study]

@SandraPrew Thank you @SandraPrew !

[DECISION2 @DECISION_Study]

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 https://t.co/UEGL7YzWav

[DECISION2 @DECISION_Study]

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 https://t.co/BIfI7nugLt

[DECISION2 @DECISION_Study]

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
https://t.co/zKbgZ2t0jQ

[MRC-NIHR Trials Methodology Research Partnership @MRCNIHRTMRP]

@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
https://t.co/jPaCNdjxTC

[DECISION2 @DECISION_Study]

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 https://t.co/4GrCNldXfq and get in touch

[DECISION2 @DECISION_Study]

For information about the background to the @DECISION_Study study see @CTRCardiffUni website: https://t.co/BIfI7nugLt

For an animated video see: https://t.co/mNQjk1sLmt

Or contact @VickyLShepherd for more info 2/2

[DECISION2 @DECISION_Study]

*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 https://t.co/4GrCNldXfq for details 1/2

[Vaughan Bell @vaughanbell]

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

https://t.co/qRoaoV0Kfz

[British Geriatrics Society @GeriSoc]

‘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 https://t.co/YS5qqJ3qn4

[CTRCardiffUni @CTRCardiffUni]

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 -

https://t.co/Sfzs7l8acU

@ResearchWales
@CR_UK
@CUBLSResearch

[Victoria Shepherd @VickyLShepherd]

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 https://t.co/XEX3k1pux7 @DECISION_Study

[DECISION2 @DECISION_Study]

First paper from @DECISION_Study exploring families' experiences acting as consultee/legal representative for research now published in @Age_and_Ageing https://t.co/nbvTSS3sZa & animation of findings on You Tube https://t.co/TpwdJXnMGq

[Kim Harman 😷 💙 @DrKimHarman]

Essential work and an opportunity to help shape it here 👇🏻