DECISION2

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 ...

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.…

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…

In DECISION Study (funded by @ResearchWales) families described using a range of factors to make a decision, based on the context, relationship, & what they knew about the person’s life, wishes/preferences. But it could be challenging to make decisions 2/4 academic.oup.com/ageing/arti…

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…

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…

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

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

*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

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

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

A year since @DECISION_Study #Twitter account was started - and what an amazing year of hearing families' experiences of making decisions about research on behalf of someone who lacks capacity to consent. Thank you! Data analysis is completed, now writing up #MyTwitterAnniversary

Thanks for getting in touch Yvonne. Shared decision making is a key area of interest in @DPMRes & @PRIMECentre & this study is exploring decisions on behalf of those with diminished/absent autonomy. Your framework sounds very interesting - it would be good to hear more!

Great video @CRN_WMid - including a relative of #CareHome resident who acted as consultee for them to participate in a #research study. The @DECISION_Study has been exploring families' experiences of acting as a consultee/representative & hearing same about importance of research

Recruitment completed for @DECISION_Study exploring families' experiences of decisions about #research on behalf of someone who lacks #MentalCapacity to #consent - huge thanks for support with recruitment to @beatdementia @HealthWiseWales @enrich_research @CRN_WMid & many others

Looking forward today's data analysis meeting - the exciting next stage of @DECISION_Study which is part of @NIHR_trainees Fellowship funded by @ResearchWales #MentalCapacity #consent #research @kerryhood @CTRCardiffUni @PRIMECentre

Final stages of data collection for @DECISION_Study exploring families' experiences of deciding about #research participation on behalf of someone unable to provide their own #consent - always a privilege to hear the personal stories shared #MentalCapacity

@DECISION_Study is looking for family members who have been involved in deciding whether a loved one (who is unable to make their own decision) should take part in a research study or not. Please get in touch [email protected] if you would be interested in taking part nitter.gq/DECISION_Study/status/…