Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners

Received: 22 November 2019 | Revised: 28 April 2020 | Accepted: 4 June 2020 DOI: 10.1111/hex.13096 ORIG INAL RE SE ARCH PAPER Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners Jahanara Miah SENSE-cog, Project manager1,2 | Piers Dawes PhD, Associate Professor3,4 Iracema Leroi MD, Associate Professor1,5 | Bella Starling PhD, Co-director of public 2 programmes | Karina Lovell PhD, Professor6 | Owen Price6 | Andrew Grundy7 | Suzanne Parsons MPH, Patient and Public Involvement Manager2 1 Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK Public Programmes Team, Research and Innovation Division, Manchester University NHS Foundation Trust and the University of Manchester, Manchester, UK 2 Manchester Centre for Audiology and Deafness (ManCAD), Manchester Academic Health Science Centre, University of Manchester, Manchester, UK 3 Department of Linguistics, Macquarie University, Sydney, NSW, Australia 4 Global Brain Health Institute, School of Medicine, Trinity College Dublin, Dublin 2, Ireland 5 Division of Nursing Midwifery and Social Work, Manchester, UK 6 | Abstract Background: Best-practice guidelines recommend that appropriate support be provided to public contributors to facilitate their involvement in research. One form of support is research awareness training. Older people with dementia and care partners were involved in four Research User Groups (RUGs) in the UK, France, Cyprus and Greece. We delivered research awareness training (RAT) to the RUGs. The aim of this study was to evaluate the acceptability and perceived outcomes of the training from the perspective of RUG members. Methods: At the end of each research training session, participants completed the Training Acceptability Rating Scale-section 2, which records the respondent's impressions of the training process and the outcomes of training. Participants were also invited to take part in semi-structured interviews at the end of the programme. Results: Thirty-four RUG members completed the TARS-section 2 with 23 complet- School of Health Sciences, University of Nottingham, Nottingham, UK ing semi-structured interviews. Over two-thirds (67%) of participants rated their Correspondence Piers Dawes, Manchester Centre for Audiology and Deafness (ManCAD), Manchester Academic Health Science Centre, University of Manchester, Oxford Road, Manchester M13 9PL, UK. Email: Piers.Dawes@manchester.ac.uk participants found group work to be beneficial for learning, the structure of training 7 Funding information European Union's Horizon 2020 research and innovation programme, Grant/Award Number: 668648 overall satisfaction with the RAT ‘a great deal’. Qualitative responses indicated that activities and topics covered appropriate. The type and format of the training materials were viewed as helpful, and they valued the new knowledge gained. Conclusions: The training contents were applicable, useful and relevant to the participants’ role within the research. We highlight the importance of facilitating participation by (a) fostering awareness of relevant research issues and (b) tailoring delivery of training according to the needs of the participants. KEYWORDS dementia, older people, patient and public involvement, research awareness, training This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2020 The Authors Health Expectations published by John Wiley & Sons Ltd. Health Expectations. 2020;00:1–14. wileyonlinelibrary.com/journal/hex | 1 2 | MIAH et Al. 1 | BAC KG RO U N D (Greece) consisting of seven to ten older people with dementia and care partners in each site. RUGs were established to contribute PPI Patient and public involvement (PPI) in research is ‘doing research research activities in the running of the SENSE-Cog programme. We with or by the public, rather than to, about, or for them’.1 PPI rec- delivered research awareness training (RAT) to RUG members to ognizes the importance of patients and the public's viewpoints and equip them with the skills and background knowledge required for 1,2 PPI ensures involvement in the SENSE-Cog programme. This paper describes the research is appropriately designed with relevant outcomes and im- that these views may differ from those of researchers. delivery and evaluation of RAT for older people with dementia and pact.3,4 With this recognition, PPI is well established internationally their care partners in role as PPI contributors. through government policies, institutes and charities in the United States,5,6 Canada,7 Europe,8-11 the UK,3,12 and Australia.13,14 However, there is a debate on the need for PPI contributors to 1.2 | Development of research awareness training receiving research training.15,16 Some consider that patients and the public are ‘experts by experience’ and so do not require training; The RAT was developed as part of the Enhancing the Quality of training might professionalize or suppress the lay viewpoint and re- User Involved Care Planning (EQUIP) programme to provide UK duce the utility of the patients’ perspective by making it too similar National Health Service mental health service users and care part- to that of researchers.17-19 However, others assert that it is unrea- ners with an understanding of research and research terminology sonable to involve people in research without equipping them with to support them as co-researchers on a mental health research pro- the basic knowledge that facilities meaningful involvement. PPI is ject.35,36 EQUIP training was developed in partnership with service 20 more likely to have a positive impact if PPI contributors receive ap- user and carers; therefore, an adaptation of this training was viewed propriate training.3,16,21 If not, their contribution may be sub-optimal appropriate for RUGs. The original EQUIP training involved a 6-day and may contribute to, rather than reduce, research waste.4 course.37,38 We consulted with RUGs1,16 on their preferences on the Increasingly, people affected by dementia are involved in PPI role delivery of the training (duration, frequency and practicalities). RUG in research22-25 and charities such as Alzheimer's society24,26 are well members’ preference was for shorter, bite-sized training delivered established in PPI. Recent scoping reviews22,23 and published evalua- as needed every 3 months, as this facilitated participation of peo- tions and commentaries23,25,27,28 highlight the impact of involvement ple with memory difficulties. We worked with the EQUIP team (KL, in dementia. Furthermore, Alzheimer's Europe published a position AG, OP) to modify the EQUIP training to 6 hour-long sessions on paper28 on the PPI of people with dementia in research rationalizing key research topics that were relevant for RUGs to take part in the the benefits and challenges in this area of work. PPI with people with SENSE-Cog PPI activities, see Bee at al37 for full details of the EQUIP dementia involves particular challenges around supporting memory training. We condensed parts of the information from chapter 1: re- and other cognitive and behavioural difficulties experienced by peo- search process, chapter 3: quantitative research design, chapter 4: ple living with dementia. 29-31 There are particular challenges faced quantitative data analysis, chapter 5: health economics, chapter 7: by people with dementia in PPI. These include a lack of training, introduction to qualitative research methods and chapter 9: princi- not understanding the complexity and perceptions of research and ples of ethical research. An example adaptation of chapter 7: health confusion about the research process. 23,25 Therefore, basic level of economics into RAT is illustrated in Appendix 1. Adaptation also in- research training should be available to PPI contributors,32 which cluded activities based on a theme that RUG members could related may enable PPI contributors to share their viewpoints more effi- to, such as ‘planning a holiday’. We planned activities for pairs or ciently15,16 and shape the research in a meaningful way from posing small groups and ensured that the contents of each session could the initial research questions to the final dissemination and imple- be delivered within 1 hour. The adapted training was structured to mentation of the research outputs.17,33 We aimed to understand the be delivered on an ‘as needed’ basis. For example, RAT on qualita- acceptability and perceived outcomes of the research awareness tive methods was offered immediately prior to the RUGs PPI activity training from the perspective of patient and public advisors who reviewing a question related to qualitative aspects of SENSE-Cog received it as part of their PPI role in a multi-national dementia re- (Table 1). search programme. 1.1 | Study context 1.3 | We implemented the following approaches to support the delivery of the training The current study is part of a work package dedicated to patient 1.3.1 | Facilitation by experts and public involvement embedded within the SENSE-Cog,34 a 5-year (2016-2020) European multi-site research programme in- All RUGs were supported by a local PPI coordinator who was identi- vestigating the combined impact of dementia, age-related hearing fied from among the research team in each site. Coordinators had and vision impairment. We set up four Research User Groups (RUGs) a background in research with people with dementia (PwD) and in Manchester (UK), Nice (France), Nicosia (Cyprus) and Athens experience of working with older adults in research settings. PPI | MIAH et Al. TA B L E 1 sessions Research awareness training Session topic Session content Session 1: Research awareness • What is research • Why research is important • What are the different types of research (qualitative and quantitative) • The importance of questioning research evidence Session 2: Understanding the research process • • • • Steps involved in the research process Group exercise How to read a paper and making sense of published papers Group exercise Session 3: Qualitative Methods • • • • • What is qualitative research - why? how? in what way? Examples of qualitative research Conducting interviews and qualitative data Advantages and disadvantages of using interviews Group exercise Session 4: Quantitative Methods • What is quantitative research - how much? how many? how often? to what extent? • Steps in conducting randomized controlled trials (RCT) • Examples of RCT • Group exercise Session 5: Developing and evaluating interventions • • • • • Session 6: Health economics and Ethics & Governance • • • • coordinators were trained by the EQUIP team (KL, OP and AG who is 3 What is an intervention? Key elements of the development and evaluation of interventions Key questions in evaluating complex interventions Group exercise How do we make choices in health evaluation? Role of economic evaluation Group exercise Ethics and governance: approval requirements, how do we assess how ethical a research study is? • Group exercise 1.3.3 | Interactive discussions a researcher with lived experience) at the University of Manchester based on a ‘train the trainers’ course39 to enable the PPI coordinators PPI coordinators delivered RAT to RUGs using interactive discus- to deliver the RAT for local implementation. Each PPI coordinator sion. This involved an exchange of ideas where both facilitator and was supported by up to two SENSE-Cog staff members (research- RUG members contributed to discussion of research topics. PPI co- ers, research assistants) to help with the facilitation of the training ordinators used a variety of approaches for presenting key ideas, for and PPI activities, particularly with the PwD who did not have a care example, interactive group work, role-play exercises, case studies partner present. and pictures (Appendix 1). 1.3.2 | Individualized support 1.3.4 | Informal discussion time During introductory meetings, coordinators completed a support We scheduled informal meeting time before and after the training to and learning needs form (Appendix 2) with individual RUG mem- encourage informal conversations. Informal meetings allowed RUG bers to understand their needs to understand how to best facilitate members to report, discuss any challenges or concerns and raise any their learning. Coordinators used this information to make individual issues after the main meeting. For example, RUG members may have support arrangements to facilitate each person's involvement. For required clarification of the involvement activity undertaken. example, for those with vision problems, coordinators positioned themselves close to the person and kept still while talking. People with vision problems were provided with training and RUG materials 1.3.5 | Posting materials in advance of the training in large font black print on yellow paper. Requirements changed over time as people's needs changed. Coordinators checked people's sup- We posted the meeting papers to RUG members 2 weeks before port needs on an on-going basis to ensure that appropriate support each session, to provide enough time to pre-read the materials. arrangements were in place. Sending information ahead of the session allowed RUG members to 4 | MIAH et Al. make notes of their thoughts and identify anything that they did not understand before the training. only TARS-section 2 to focus on RUG members’ impressions of the training and the outcomes of training. Some wording of items was altered to make them applicable to the SENSE-Cog RUG role (Appendix 3) and to make it understandable for the RUG members. For example, 2 | M E TH O DS ‘Do you expect to make use of what you learnt in the training?’ was changed to ‘Do you think what you learnt in the training will be useful 2.1 | Participants in your role as a RUG member?’. The TARS-section 2 was translated into Greek and French using the ‘forward and back-translation’ proce- The study participants were identified through the RUGs. Inclusion dure for use in Nice, Nicosia and Athens.43 criteria were RUG membership, participation in RAT sessions and capacity to provide informed consent.40 We invited all RUG members (n = 34) who participated in RAT in Manchester, Nicosia, Nice 2.4 | Semi-structured interviews and Athens to take part in the training evaluation. 34 RUG members consented to the TARS-section 2 questionnaire evaluation and 23 RUG members who completed the RAT were invited take part in a consented to the semi-structured interviews. semi-structured interview (Appendix 4) to give their impressions of the training, indicate what knowledge and skills they had acquired and how they had applied the knowledge and skills. The semi-struc- 2.2 | Design tured interviews took place 6 months after the delivery of the last RAT session (Table 2). Coordinators conducted one-to-one semi- We adopted a mixed methods approach. We used TARS-section 2 structured interviews with RUG members in each site, and the in- and semi-structured interviews to understand RUG members’ expe- terviews were audio recorded for transcription.40 Coordinators then rience of the RAT. RAT sessions were delivered approximately every translated the transcriptions into English for qualitative analysis. 3 months alongside RUG meetings over a 2-year period. At the end of each session (Table 2), participants were asked to complete the TARS-section 2 immediately after each session, to take account of 2.5 | Ethical considerations those with memory problems. The study received ethical approval from the Manchester University Research Ethics Committee. Additional ethical approvals were 2.3 | Training acceptability rating scale (TARS) sought and obtained for each study site, relevant to local arrangements. Informed consent is an important consideration for research The TARS is a self-completed questionnaire which takes 5-10 minutes with people with dementia, particularly establishing whether po- to complete, consisting of two sections: TARS-section 1 consists of tential participants have the capacity to provide informed consent six self-report items, which measures training negative side effects, and recognizing any changes in capacity that may develop as the re- appropriateness, consistency and social validity. TARS-section 2 fo- search progresses.44,45 The capacity of participants with cognitive cuses on the respondent's impressions of the training process and impairment to give informed consent to participate was assessed the outcomes of training and includes three open-ended questions on an on-going basis by trained staff. Further details concerning on- about ‘the most helpful’ parts of the training, ‘recommended changes’ going assessment of capacity are available elsewhere.40 41,42 and ‘any other comments’. All numerical responses are rated on a four-point Likert scale, ranging from ‘not at all' (score 1), ‘a little' (score 2), ‘quite a lot' (score 3) to ‘a great deal' (score 4). We did not use 2.6 | Data analysis TARS-section 1, in order to keep the survey simple to complete for RUG members and our key focus was on RUG members’ experience SPSS (IBM, Armonk NY) was used to generate descriptive sta- of training, rather than their view on social validity. We administered tistics (frequencies, means, interquartile range and standard TA B L E 2 Time line of RAT delivery and TARS-section 2 administration and semi-structured interviews Timeline Jan 2017 April 2017 Jul 2017 Oct 2017 Jan 2018 April 2018 Delivery of Research Awareness Training ✓ ✓ ✓ ✓ ✓ ✓ Administration of TARS-section 2 questionnaires ✓ ✓ ✓ ✓ ✓ ✓ One to one interviews with RUG members Oct/Nov 2018 ✓ | MIAH et Al. 5 deviations) to describe the variables of interest. Interviews and list of themes with associated codes. The coding framework was free-text data from the TARS-section 2 open-ended questions emailed to coordinators in Nice, Nicosia and Athens to make sug- were analysed thematically.46 Data management was aided gestions for additional themes and/or combinations of themes. by the use of NVivo software version 11 (QSR International, Any additional themes identified by coordinators were added to Doncaster, Australia) and applying the Framework method.47 The the list of themes. The overall data set was then analysed accord- Framework method allows in-depth analysis of key themes across ing to the final coding framework. We found the responses to the the whole data set, as well as between individual accounts using free-text section of the TARS-section 2 were very brief; mostly the interview topic guide (Appendix 4) as a starting point.46,47 only few words. We therefore merged the TARS-section 2 free- JM and SP independently examined the data to identify themes text data and interview data to provide a richer understanding on (Table S1: Codebook extract example). JM and SP then met and emerging themes. discussed the emerging themes to establish consensus for the interpretation of categories and themes. The emerging themes were then developed into a coding framework which included a TA B L E 3 all sites Characteristics of TARS-section 2 participants across RUG Site Care partner using the TARS-section 241,42 (Table 3: Characteristics of TARS- male female male female tend the training sessions consistently due to ill health, carer burden or hospital appointments and therefore RUG members Total did not complete the TARS-section 2 for all sessions. Additionally, there were dropouts as some RUG members lost the capacity to 4 1 0 4 9 Nicosia 3 2 1 1 7 Nice 2 1 1 3 7 Athens 4 3 0 4 11 13 7 2 12 34 FIGURE 1 All 34 RUG members consented to participate in the evaluation section 2 participants across all sites). RUG members did not at- Person with dementia Manchester Total 3 | R E S U LT S Overall findings of TARS-section 2 across all sites provide informed consent (n = 2) or died (n = 5). 151 TARS-section 2 questionnaires were completed over six training sessions across all sites. Participants included males (n = 9) and females (n = 14), aged 65-85 years and included people with dementia (early-stage dementia; n = 20). 6 | MIAH et Al. TA B L E 4 Characteristics of interview participants across all sites following quotes, the site is reported first (ie ‘Manchester’, ‘Nice’, ‘Nicosia’ or ‘Athens’). ‘T’ refers to TARS-section 2 questionnaire or Person with dementia Care partner RUG Site male female male Manchester 3 0 0 4 7 ‘RUG (number)’ refer to the individual RUG member being quoted. Nicosia 2 1 1 1 5 ‘PwD’ and ‘care partner’ refer to a person with dementia or a carer Nice 1 1 0 3 5 for someone with dementia, respectively. The counts of the themes Athens 2 1 0 3 6 from the TARS-section 2 and semi-structured interview are pro- Total 8 3 1 11 23 female ‘I’ refers to semi-structured interview response, TARS-section 2 was Total completed anonymously; therefore, quotes do not specify whether it was a PwD or care partner. For semi-structured interviews, quotes vided as supplementary information (Table S5). Five themes developed from the analysis of the transcribed in- 3.1 | Training acceptability rating scale terviews with the RUG members: structuring of training activities alongside meetings, new knowledge, training materials and handouts, facilitator's role and approach, group work. It is important to A majority of participants (51%, median score 3.5) rated the training distinguish that RUGs are not representative of the wider popula- at ‘a great deal’ in improving their understanding of research aware- tion, but instead their own distinctive cases. ness (Figure 1). With 45% of participants, (median score of 3) viewing the training helped them ‘quite a lot’ to develop skills. Similarly, 48% of participants (median score of 3) answered ‘a great deal’ on the training increasing their confidence. A majority of participants (51%) 3.3 | Theme 1: Structuring of training activities alongside meetings rated ‘a great deal’ (median score of 4) regarding what they learnt in the training will be useful in their role as Research User Group Participants talked about how the structuring of the training along- members. The training facilitators were rated highly (89%, median side the RUG meetings (for PPI activities) had been useful and had score 4) at ‘a great deal’ as competent in leading the training. In terms helped RUG members to contribute to the PPI activities: of whether the training covered the topics it set out to cover, 54% (median score of 4) responded ‘a great deal’ and 82% of participants ‘It was interesting the fact that some group of people (median score of 4) rated ‘a great deal’ in facilitators making them with no previous experience in such matters had an feel comfortable and understood during the training sessions. All introduction of a research process and the detailed sites rated ‘a great deal’ (median score of 4) for overall satisfaction way it was delivered, the gradual way, seemed to me with the training and across all research awareness training sessions an awfully useful procedure. I think the training was (median score 4). Further information on TARS-section 2 scores de- a very good introduction in order someone to be able scriptive statistics by sites is available in Table S2 and by RAT ses- to participate as helpfully as possible in the research sions available in Table S3. process’. In the Manchester site, one participant rated several questions (I, Athens, RUG 2, care partner) at ‘not at all’, within the free-text question they commented, ‘I’m a graduate in natural sciences, so I am already familiar with the content of the training’ (Manchester T130). Also, for question two (‘Did ‘The sessions (RAT training), the meetings went along the training help you to develop skills?’), three participants rated ‘not so well that guided us through. It was not the case at all’ in Manchester in relation to quantitative methods sessions in that one session was about something specific and randomized controlled studies. then after six months the topic was something different in a way that we couldn’t participate…….extremely 3.2 | Qualitative results helpful and wonderful’. (I, Nicosia, RUG4, PwD) Twenty-three RUG members (Table 4: characteristics of interview participants across all sites) consented to the semi-structured inter- ‘For me the short trainings before starting to talk views. Reasons for non-consenting for semi-structure interviews about the project are very good. It allows me to put were increased burden, ill health of either the PwD or the care my shoes in the subject’. partner. Interview participants included males (n = 9) and females (I, Nice, RUG 4, PwD) (n = 14), aged 65-85 years and included people with dementia (earlystage dementia; n = 11). Not all respondents answered the open-ended questions in the final section of the 151 TARS-section 2 completed (Table S4). In the A few participants mentioned how initially they were unsure why they required training in research, but over time it became apparent to them why it was structured in that manner: | MIAH et Al. ‘I tried to understand what this was about (er). Especially, where this goes and why would you do that. When a in the beginning when you focused on understanding few of us all sat round, I enjoyed that because I found ‘what is research’, I was wondering why we are work- it…you could all participate and put your own input ing to understand ‘what is research’, if we are here for into it. Somebody would say something you hadn't a study on hearing, memory and vision. (Er). At the end, thought of. But I really enjoyed that activity one and the reason why was very clear. It became clear because the visual one; I thought that was really good. I did we had talk about how do we evaluate a research study, enjoy that…..When it was visual and you could see how do we understand the study’. things, because I can't hear everything, I understood (I, Nicosia, RUG3, PwD) 7 more because I could see it’. (I, Manchester, RUG2, ex- care partner) 3.4 | Theme 2: New knowledge Participants also talked about how information was presented to them using visual materials and large texts. Printed information pro- Participants perceived that they had acquired new knowledge, vided to supplement the training was viewed as useful to refer to participants talked about gaining an understanding of research during and after the training sessions. Also handouts allowed partic- procedures, understanding research papers, understanding how ipants to pre-prepare for training, take notes and to refer back to the interventions are designed and trialled, and insight into ethics and material or notes to refer to at a later date: governance of research: ‘I liked the handouts, I always used to find them help‘I’ve learnt about things that I didn’t know about, like ful to look through, so if I didn’t always understand how they do the interventions and how you should what was being said, I could look at the handouts and question research studies, erm not just believe what read it’. they say, that we should look at what methods they (I, Manchester, RUG5, PwD) used and who they recruited and how it was tested, all them things, I sound like I know it all now, don’t I’? ‘It was easy to read, I liked the images used, and the (I, Manchester, RUG 4, PwD) writing was always big and clear. It was good to get the handouts before the training or the meeting, it 3.5 | Theme 3: Training materials and handouts gave you time to look through things and also to come prepared knowing what to expect at the meetings, that was good’ RUG members indicated how the creative approaches of the training (I, Manchester, RUG 6, care partner). materials used supported their learning. Participants talked particularly about the holiday-themed training activities. For example, RUG members were asked to plan a holiday using the research process, 3.6 | Theme 4: Facilitator's role and approach perform one-to-one interviews and use a paper survey to collect data on holiday experiences and compare different holiday packages Participants talked about the important role of the facilitators and with a set budget to understand the cost-benefit analysis process: approach in supporting the process of learning. Participants commented about the facilitators being helpful by providing ‘personal ‘So, and we did one thing on holidays, didn’t we? With attention to answering questions about everything and anything to- James (PPI coordinator) and he…I can’t recall the rea- gether with a proper way of dealing with the agenda’ (Manchester son why we were at one of the community centres T127), ‘to see that there are people prepared to try to make the situ- and we were doing the holiday budget and…et cet- ation better for carers as well’ (Manchester T140). One participant era. And I can’t really recall the reason why he said mentioned how the facilitator encouraged everyone in the meetings to do it, but we act…we re-enacted with each other, to participate, ‘discussion is open and vivid and all participants are the people that were there. And it was…that was very encouraged to participate’ (Athens T15). interesting’ Participants talked about how the approach used by facilitators (I, Manchester, RUG3, PwD). to present topics to the RUGs was helpful. Participants felt that the clearness of the facilitator's presentation helpful: ‘They made it fun as well as educational….I found that ‘The presentation regarding the topic was thorough brilliant, that. I liked the activities with, you know, and understandable, initially giving a good idea for the what they were doing and we were doing that thing topic "research"’ on holidays and then putting them plans together and (Athens, T2). 8 | MIAH et Al. ‘… the coordinators were always there to explain Others suggested shorter sessions to ‘start earlier and finish earlier’ things that we didn’t understand, stopping at dif- (Manchester, T132) and one participant commented ‘sometimes too ferent times to make sure everyone are still with it much information’ (Manchester, T147). but it wasn’t a patronizing thing, the conversations were always two way and I think we were always listened to’. 4 | D I S CU S S I O N (I, Manchester, RUG 7, care partner) The purpose of this study was to understand the acceptability and ‘They made it fun to learn, … you didn’t make us feel perceived outcomes of RAT from the point of view of the RUG like we didn’t know anything, we were encouraged to members who received it. Although we did not specifically evalu- talk about it and make sense of it and ask questions ate which RAT elements were key in supporting RUG members’ about things that we didn’t understand’ (I, Manchester, RUG 6, care partner). involvement, participants rated acceptability highly and the perceived impact of the RAT as positive in general. Participants reported improvement in their knowledge of research. Participants 3.7 | Theme 5: Group work viewed that the structuring of the training session delivery alongside the RUG meetings as relevant and supported their PPI role and found the opportunity to put their learning into practice with Group work was viewed as a positive experience for learning. the PPI activities within the RUG meetings. Therefore, the provi- Stimulating discussions in the group settings allow for the two-way sion of research knowledge may be particularly valuable in sup- process of shared learning and personal development. Participants porting PPI in research18,48 and content of training should focus on commented that group work made them feel part of the team and providing knowledge that PPI contributors lack.49 One participant nurtured peer support for participants, which was viewed as a valu- rated RAT as ‘not at all’ helpful, due to his previous knowledge on able way to help understand each other's circumstances and needs research through having completed a science degree. This high- to support each other: lights the need for further work on how training can be individualized or how experienced individuals can be involved in a group of ‘This was something innovative for me, to be partic- people with mixed ability. ipating in a group for research. In this sense, I will Participants perceived social interaction with learning as an im- agree that even just participating in such a process portant factor. This finding underlines the importance of the social is important…Yes, for sure. Otherwise, I wouldn’t be aspects of RAT delivery. The delivery of training in group settings here today. It’s a good feeling, to be heard. You gain provided opportunities for RUG participants to share experiences this feeling that you are not alone and that there are and information with others. Our findings follow studies,18,48,50 people that care for you, and that what you say can which identified that the learning setting critically encourages dis- go further’ cussions between learners and enhances the learning experience. (Athens RUG 5, care partner). This approach values RUG members bringing their direct, personal experience of the topic knowledge to the research process ‘I like coming to the meetings it does help me take my and a two-way process of mutual learning. The qualitative findings mind off things……So for me, I think yes, it was useful showed that participants highly favoured group work, in particular because it made my time worthwhile, giving my time the discussions. to this group. But even if it wasn’t I enjoy coming to Facilitation skills and competencies of the person delivering the groups, meeting other people and talking to them the training were important. In this study, the PPI coordinators is good enough for me…..It’s also a good way for us to had a background in research with people with dementia, which get together with other people in similar situation, to may have contributed to the positive rating of facilitators across talk to others’ sites. Being able to apply a range of didactic, small group and in(I, Manchester, RUG 4, PwD). teractive approaches to training delivery was an essential skill for the person delivering the training. Facilitation of RAT requires the 3.8 | TARS-section 2 open-ended responses on improvements and changes to training trainers to demonstrate knowledge and expertise in the training subject areas. There has been little research on the recipients’ experience of PPI training. There is also debate on whether RAT is appropri- Participants suggestions for improvements to training were var- ate for PPI.12,16,18 Some have argued that providing training to PPI ied, such as ‘a different approach between the care recipients and contributors undermines the validity of lay people's contribution to caregivers’ (Athens T19), ‘there is the need for more time on ac- research.17,18,33 But lack of training support may be a barrier to ef- tivities’ (Athens T50), ‘we would like more exercises’ (Athens T13). fective PPI. | MIAH et Al. 4.1 | Strengths and limitations 9 contributors in addition to the required training content considered appropriate by researchers for involvement of lay people in The combination of quantitative and qualitative aspects in the specific research questions. TARS-section 2 enabled us to evaluate the overall satisfaction and The training session on ethics and governance was delivered perceived impact of the training, as well as providing an oppor- in the last session because the other sessions were required to fit tunity for participants to suggest where changes to the training alongside specific SENSE-Cog PPI activities. PPI Coordinators sug- could be made. However, the TARS-section 2 open-ended section gested that ethics and governance would have been more useful for lacked detailed responses from participants, typically consisting RUG members to understand from the outset to provide the RUG of only a few words of response. Furthermore, as TARS-section 2 members with an understanding of the standards and processes for was anonymously completed, it limited us in following up queries ethical research. to investigate particular issues highlighted by participants and we did not know if the same participants took part in the semi-structured interviews. 5 | CO N C LU S I O N The TARS-section 2 was completed immediately after each training session to ensure that those with memory problems were RUG members reported that the training contents were applicable, able to provide immediate feedback. However, administering the useful and relevant to their involvement role in the research, fos- TARS-section 2 only after RAT meant that we had no baseline tered awareness of research and supported their involvement in re- information to understand the impact of the training pre- and search. This study demonstrates that the RAT package can be used post-delivery and no data on the long-term impact and accept- to train older adults with dementia and their care partners. PPI con- ability of RAT were available. However, additional semi-structured tributors may be supported via facilitation by experts, individualized interviews with RUG members allowed further insight into the support, interactive discussions, informal discussion time and post- perceived impact of the RAT and factors that helped the learning ing materials in advance of training. experience. Although PPI training takes time and resources, training plays We did not collect additional demographic data such as diag- a key part in supporting PPI contributors’ involvement in resea nosis, language proficiency, memory capabilities, educational level rch.6,7,10,20,21,25,26,28,37 There is a need for funders to fund training or other demographic details. Collecting additional demographic and support for PPI contributors, and availability of tools for engag- information could help with understanding differences and needs ing patients and other stakeholders in research across conditions between individuals. In addition, we did not collect baseline data and populations.6,7,10,51,52 on RUG members’ research knowledge before the training, as there The RAT will be made available to researchers internationally to were no criteria for research knowledge to participate in PPI ac- support PPI in research via application to Suzanne.Parsons@mft. tivities. In hindsight, it may have been useful to understand if RUG nhs.uk. Additional research materials for the RAT can be obtained members had previous learning about research outside of the RAT. from the freely available online EQUIP training.37 Details on baseline levels of knowledge may help tailor training support appropriately for each person. AC K N OW L E D G E M E N T Although the TARS-section 2 was anonymous, responses may The authors would like to acknowledge the older people working have been identifiable to the coordinators who were collecting data with us in the UK, France, Cyprus and Greece and SENSE-Cog col- because of the small size of each RUG. Interview data were collected leagues in these countries coordinating the Research User Groups. by the coordinators rather than an independent researcher. Lack of The authors would like to acknowledge the EQUIP teams' contribu- anonymity of responses and researcher bias may have impacted on tion to the adaptation of the research awareness training. responses provided by respondents and resulted in responses being overly positive. C O N FL I C T O F I N T E R E S T The authors declare that they have no competing interests. 4.2 | Reflection E T H I C A L A P P R OVA L The study was approved by the University of Manchester Research Although we consulted with the RUGs in the planning of RAT, that Ethics Committee (Reference Number 2017-0627-2142). Additional is, frequency and duration and delivery point of RAT, a more ac- ethical approvals were sought and obtained for each study site tive involvement of RUG members in the development of the RAT (Nicosia, Nice, Athens), as relevant to local arrangements. content or exploring the options for different approaches for a particular activity could have improved the experiences of RUG DATA AVA I L A B I L I T Y S TAT E M E N T members. We did not provide opportunities for RUG members The data sets generated and/or analysed during the current study to identify additional training needs that would be of interest to are not publicly available due to the privacy of participants and risk them. For future work, we will discuss research interests of PPI of indirect identification by characteristics given in the interviews. 10 | MIAH et Al. TARS-section 2 data are available by application to Suzanne. Parsons@mft.nhs.uk. 15. ORCID https://orcid.org/0000-0002-2122-7007 Jahanara Miah Piers Dawes https://orcid.org/0000-0003-3180-9884 Iracema Leroi https://orcid.org/0000-0003-1822-3643 Bella Starling https://orcid.org/0000-0001-9981-5637 16. 17. REFERENCES 1. INVOLVE. Standards development partnership. National standards for public involvement. www.invo.org.uk/wp-content/uploa ds/2018/06/Public_Involvement_Standards_v1.pdf. Accessed March 18, 2019. 2. National Institute for Health Research. 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Res Involv Engagem. 2017;3(7). https://doi.org/10.1186/s4090 0-017-0056-0 S U P P O R T I N G I N FO R M AT I O N Additional supporting information may be found online in the Supporting Information section. How to cite this article: Miah J, Dawes P, Leroi I, et al. Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners. Health Expect. 2020;00:1–14. https:// doi.org/10.1111/hex.13096 APPENDIX 1 Slide 1 Slide 2 What is Economics? • Economics is the study of how people (or organisa ons) makes choices under condi ons of scarcity (lack of resources) • Everyday choices involves economics, every me you make a choice there is certain value you place on that choice. The value has benefits and costs • Today you decided to spend 3 hours of your me at this mee ng Session 6a: Health Economics Choice Opportunity cost Research User Group Shopping, friends, mee ng relax • 1 11 Ulity Was is worth it? The opportunity cost is the value of the alterna ve choice you give up 2 12 | MIAH et Al. • Everyone uses economics every choice we make has benefits and costs. • To choose between possible interventions. • Decisions are driven by the perceived value of the outcome of the • Every day we make lifestyle choices. various options, what's the cost to society. • Value of expected outcomes or benefits against some set of alternatives (alternative choice given up). • Economics tries to find ways of understanding and quantifying that value and benefits and the utility (satisfaction). • Utility—preferences/satisfaction over some set of goods and services. Slide 5 Slide 3 Group Exercise: Making Choices So What is Health Economics? u have a budget of £2800 1 Y
Health economics is the study of people and choices and consumption of health and healthcare 2. You have two opons Scarcity means we must make choices 3. Opon 1 you can have a signature holiday, just for you 4. Opon 2 You can take addional 3 family members or friends (who really need it) with you on a holiday 5. Use the decision making tool to help you 6. Decision me, opon 1 or opon 2? Healthcare providers Right prices Choices Decisions Right quantity (number) of health care related products and related service 5 Greatest benefits but lowest cost VALUE FOR MONEY 3 • Time to be an economist! • In small groups of 2-3 • Health-care providers need to make choices and decisions. • Complete exercise: Making choices • NHS—To choose between possible interventions, they calculate • Feedback to the whole group the Quality-Adjusted Life Years (QALYs). Interventions costing the NHS less than £20 000 per QALY gained are cost-effective. Those Slide 6 costing between £20 000 and £30 000 per QALY gained may also be deemed cost-effective, if certain conditions are satisfied. • Right prices—the cost of producing health-care service/product. Decision making tool: • Decision on how to spend the health-care budget—value for money. • Cost-effectiveness important factor in government decision making, but not the only factor. Fair distribution of health-care resources (which is scarce). Opon 1: A holiday just for you Benefits (advantages) Opportunity cost (what have you given up) Slide 4 Risks (possibilies of things going wrong) Anything else we need to know about? How do we make decisions? Idenfy what we know: 6 • Benefits and strengths • Disadvantages and weaknesses Decision-making tools help economist to consider benefits and • Likelihood of benefits (or drawbacks) costs of decision making. • What we can afford • Who benefits? who pays? 4 | MIAH et Al. Slide 7 13 Slide 9 Opon 2 Decision making tool: Opon 2: A holiday for you and 3 others Benefits (advantages) Opportunity cost (what have you given up) Risks (possibilies of things going wrong) Anything else we need to know about? hps://www.thomascook.com. Accessed 03.05.18 9 7 Slide 8 • 5 star • Travel from Manchester • Risks: You might fall ill or have an accident—you'll be on your own Opon 1 with no close friend or family to help you. • Advantages: It 5 star signature holiday, transfer time only 20 minutes, nearby travel from Manchester, less travel time, fewer risks of missing flights. 2 weeks of just you time to relax and enjoy. • Wrap up—making choices is difficult as there are different factors involved, one decision for one person might work well, but not for another. • Decision on health-care treatment and service—impacts on the individual (real cost of value). hps://packages.holidaypirates.com/details/23954/playa-costa-verde-hotel?holidayId=985542541&searchId=349146712&urlRef=true. Accessed 03.05.2018 8 • 3 star • Travel from Gatwick • Additional costs, time, stress of travelling from Manchester/might need overnight accommodation • Risks: not making it on time—missing flight, queues/accident on motorway. Train delayed • Advantage: 3 other people benefit from the holiday experience, you spend time with friends/ family, do activities together, etc | 14 MIAH et Al. APPENDIX 2 7 Did the training cover the topics it set out to cover? Not at all S U P P O R T A N D L E A R N I N G N E E D S FO R M 8 Research User Group (Site Name) Postal Address Other My Needs and Support as a Research User Group member A little Quite a lot A great deal What was the most helpful part of the training for you, personally? 10 What change, if any, would you recommend? (eg to the content or teaching) 11 Please make any other comments that you would like to offer. Contact Number Email A great deal 9 Title and full name Contact details: what's the best way to contact you? Quite a lot Did those who led the training sessions make you feel comfortable and understood Not at all My Personal details: A little Thank you very much for your feedback (from Milne, D. & Noone, S. 1996). My Needs and Support for Learning APPENDIX 4 Other, for example dietary requirements and travel arrangements R U G S E M I S T R U C T U R E D I N T E RV I E W TO P I C G U I D E *Questions to be paraphrased by patient and public involvement coordinators APPENDIX 3 1. What did you think about the Research Awareness Training? 2. Do you feel the Research Awareness Training sessions helped A DA P T E D T R A I N I N G ACC E P TA B I L I T Y R AT I N G S C A L E you in your role as a member of the Research User Group? ( TA R S ) -S EC T I O N 2 3. Did you feel that your thoughts/input were listened to and Training Course: Adapted SENSE-Cog Research Awareness 4. Did you feel that your thoughts/input where useful to the valued? Training SENSE-Cog research? 5. Were you given feedback from SENSE-Cog researchers/coordi- Date: Title of session: Study Site: nators on where the Research User Group member's had had an These questions focus on how you feel today's session has gone. impact? (ie whether you think the training was of a high quality, and whether For each question please circle the statement that best expresses involvement tasks relating to the SENSE-Cog programme? PLEASE CIRCLE ONE ANSWER: Did the training improve your awareness of Research? Not at all 2 3 4 A great deal A little Quite a lot A great deal • Impacted on the different tasks within SENSE-Cog? • Will impact on for the end users (older people with dementia and age-related hearing and/or vision impairment)? 9. In terms of your role as a Research User Group member within SENSE-Cog, to what extent do you feel you were: Not at all b. Supported to get involved in the different tasks and opportu- A little Quite a lot A great deal Do you think what you learnt in the training will be useful in your role as a RUG member? A little Quite a lot A great deal How competent were those who led the training? Not at all 6 Quite a lot 8. To what extent do you feel your involvement: Has the training made you more confident in talking about research? Not at all 5 A little Did the training help you to develop skills to question Research? Not at all you? Please explain: 7. To what extent do you feel you were able to contribute to the your opinion. 1 6. Do you feel your experience of being a Research User Group member matched up to how the role was originally described to you felt it was helpful or not). A little Quite a lot A great deal Overall, how satisfied are you with the training? Not at all A little Quite a lot A great deal a. Valued as a partner in this process? nities within SENSE-Cog? 10. Thinking about your involvement in the different tasks can you talk a bit about your relationship with: a. The researchers, how they supported you and communicated with you? b. The Research User Group coordinators, how they supported you and communicated with you?