NIHR CED and SSCR: Carers' Involvement in Research by https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt Share your experiences, thoughts and suggestions to improve carers' involvement in health and social care research en-us 2022-06-06 12:08:23 UTC 2022-06-06 19:07:59 UTC hello@padlet.com https://padlet-uploads.storage.googleapis.com/1724403835/f5260b6c3f93777d5008bd933f26f31e/NIHR_circle.jpg Topics https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212361953 Research rarely researches the topic or factors that I believe are key.]]> 2022-06-06 15:37:12 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212361953 Carer Involvement https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212362791 Carers are often no even consulted when considering the care package of a service.]]> 2022-06-06 15:37:57 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212362791 Carer Confidentiality https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212364761 What a carer has to say may be offensive (breaks confidentiality of the service user) or the researcher breaks the confidentiality of the care when talking to the service user.]]> 2022-06-06 15:39:37 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212364761 All stakeholders https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212368784 Research should involve the learning of stakeholders from one another to clarify misunderstandings rather than re-enforcing them (co-production).

The defining of the research study and the sense-checking of the conclusions of the research.]]> 2022-06-06 15:43:00 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212368784 Not sure how well these discussions acknowledge people at the intersection of research and caring (ie professional researchers who are also carers) dfenney2 https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212369380 2022-06-06 15:43:33 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212369380 Carer Availability + Payment https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212370651 Many carers work and cannot find the time, confidentiality or loss of earnings.

Those not-working can fall-foul of the DWP and benefits system/carers allowance.]]> 2022-06-06 15:44:43 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212370651 Carer Wellbeing https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212377328 Many carers are angry, grieving, living with their own health and wellbeing and spiritual wellbeing needs, finance and housing needs, fighting for the person they care for. All these factors can cause them to be disturbed. Involvement should include an expectation of 'recovery' for the carers. ]]> 2022-06-06 15:50:35 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212377328 Wealth of knowledge https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212378413 Carers provide an immense amount of skills and knowledge that can support a research project.]]> 2022-06-06 15:51:37 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212378413 Level of Training Required https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212416320 How much training does a member of the public (carer) need in 'research' to be involved in all stages of a research project from pre-bid to producing and sharing a published report and the findings?

A number of carers and service users who are trained researchers before their caring role or illness.  It would be wonderful to use these skills effectively and support recovering after severe illness.]]> 2022-06-06 16:23:13 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212416320 Accessibility https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212416764 When will research be accessible?]]> 2022-06-06 16:23:35 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212416764 Ethics around confidentiality jeremytaylor5 https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212420629 Possible need for some guidance for carers on how to navigate ethics of what to reveal on behalf of the cared for person, especially if the latter lack capacity

]]> 2022-06-06 16:26:14 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212420629 Prioritising and Funding https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212420818 Technically accurate research is not any good if it is asking the wrong question.  We need carers to be driving research recommendations.]]> 2022-06-06 16:26:23 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212420818 I recently sent information from Carers UK website to a carer as they were not sure if they were eligible for carer allowance which they found helpful https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212421409 2022-06-06 16:26:50 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212421409 https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212421478 Carer relationships - both with service providers and with the people they support - affect their needs when involved with research. This makes PPI with carers unique from general PPI. They need a space to talk separately from these other groups, but also together with them. However, there is always a fluidity and overlap with people holding multiple roles. ]]> 2022-06-06 16:26:53 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212421478 Training for researchers at Bournemouth Uni NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212441650 https://www.applycpd.com/BU/courses/112131 ]]> 2022-06-06 16:43:33 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212441650 NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212442265 https://www.voice-global.org/ ]]> 2022-06-06 16:44:07 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212442265 NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212442637 Link to Chief Cook and Bootle washer (Older Male Carer’s), Carers, Bournemouth University https://www.bournemouth.ac.uk/about/our-faculties/faculty-health-social-sciences/public-involvement-education-research/our-resources/carers ]]> 2022-06-06 16:44:30 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212442637 NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212443553 Payment guidance for researchers and professionals | NIHR]]> 2022-06-06 16:45:13 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212443553 NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212446540 Balancing carer perspective with patient/service user perspective as well as managing whose narrative is being shared]]> 2022-06-06 16:47:33 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212446540 Impact that follows NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212447438 From webinar chat: "One only hope that these excellent research projects are followed through with a positive impact rather than just a paper exercise " Walk the walk Talk the Talk " would be my final message to al especially the organisational hierarchy with the say so !"]]> 2022-06-06 16:48:23 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212447438 Identity NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212448269 From webinar chat: Some carers that i work with do not see themselves as carers but see their duty/role as caring for their loved one. How can we engage these people that they are the right persons to be involved in research..

]]> 2022-06-06 16:49:14 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212448269 Checklist around expectations? NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212450026 From webinar chat: "Could we develop a carers checklist for what carers should expect when taking part in research some standards"]]> 2022-06-06 16:50:36 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212450026 NIHR Cambridge BRC training NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212451644 NIHR Cambridge BRC has the following free online information sessions for patients, carers and members of the public in 2022: 

What can Patient and Public Involvement contributors in research actually do?

Thursday 16 June from 1.00pm to 2.00pm
 
Getting involved in health research at NIHR Cambridge BRC

Monday 31 October from 12.00 noon to 1.00pm
For further details and to register:  https://bit.ly/Trg4PPI]]> 2022-06-06 16:52:03 UTC https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212451644 Individual experiences? NIHRSSCR https://padlet.com/NIHRSSCR/p6ueh73uen1jj9vt/wish/2212453366 From webinar chat: "One of the issues that comes to mind with involving family carers in research is that their experience is of perhaps looking after only one or at least a limited number of members of their family; it is therefore a very personal experience.  Every carer is an individual and they bring their unique personal values and capabilities to their caring role.  It can be particularly difficult when they care for an individual that lacks capacity (an issue that has arisen during this webinar).  It is somewhat different to be involved in research when one can bring a broader range of life experience to the table."

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