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

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 completing semi‐structured interviews. Over two‐thirds (67%) of participants rated their overall satisfaction with the RAT ‘a great deal’. Qualitative responses indicated that participants found group work to be beneficial for learning, the structure of training 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.


Patient and public involvement (PPI) in research is 'doing research
with or by the public, rather than to, about, or for them'. 1 PPI recognizes the importance of patients and the public's viewpoints and that these views may differ from those of researchers. 1,2 PPI ensures research is appropriately designed with relevant outcomes and impact. 3,4 With this recognition, PPI is well established internationally through government policies, institutes and charities in the United States, 5,6 Canada, 7 Europe, [8][9][10][11] the UK, 3,12 and Australia. 13,14 However, there is a debate on the need for PPI contributors to receiving research training. 15,16 Some consider that patients and the public are 'experts by experience' and so do not require training; training might professionalize or suppress the lay viewpoint and reduce the utility of the patients' perspective by making it too similar to that of researchers. [17][18][19] However, others assert that it is unreasonable to involve people in research without equipping them with the basic knowledge that facilities meaningful involvement. 20 PPI is more likely to have a positive impact if PPI contributors receive appropriate training. 3,16,21 If not, their contribution may be sub-optimal and may contribute to, rather than reduce, research waste. 4 Increasingly, people affected by dementia are involved in PPI role in research [22][23][24][25] and charities such as Alzheimer's society 24,26 are well established in PPI. Recent scoping reviews 22,23 and published evaluations and commentaries 23,25,27,28 highlight the impact of involvement in dementia. Furthermore, Alzheimer's Europe published a position paper 28 on the PPI of people with dementia in research rationalizing the benefits and challenges in this area of work. PPI with people with dementia involves particular challenges around supporting memory and other cognitive and behavioural difficulties experienced by people living with dementia. [29][30][31] There are particular challenges faced by people with dementia in PPI. These include a lack of training, not understanding the complexity and perceptions of research and confusion about the research process. 23,25 Therefore, basic level of research training should be available to PPI contributors, 32 which may enable PPI contributors to share their viewpoints more efficiently 15,16 and shape the research in a meaningful way from posing the initial research questions to the final dissemination and implementation of the research outputs. 17,33 We aimed to understand the acceptability and perceived outcomes of the research awareness training from the perspective of patient and public advisors who received it as part of their PPI role in a multi-national dementia research programme.

| Study context
The current study is part of a work package dedicated to patient and public involvement embedded within the SENSE-Cog, 34 a 5-year (2016-2020) European multi-site research programme investigating the combined impact of dementia, age-related hearing and vision impairment. We set up four Research User Groups (RUGs) in Manchester (UK), Nice (France), Nicosia (Cyprus) and Athens (Greece) consisting of seven to ten older people with dementia and care partners in each site. RUGs were established to contribute PPI research activities in the running of the SENSE-Cog programme. We delivered research awareness training (RAT) to RUG members to equip them with the skills and background knowledge required for involvement in the SENSE-Cog programme. This paper describes the delivery and evaluation of RAT for older people with dementia and their care partners in role as PPI contributors.

| Development of research awareness training
The RAT was developed as part of the Enhancing the Quality of User Involved Care Planning (EQUIP) programme to provide UK National Health Service mental health service users and care partners with an understanding of research and research terminology to support them as co-researchers on a mental health research project. 35 introduction to qualitative research methods and chapter 9: principles of ethical research. An example adaptation of chapter 7: health economics into RAT is illustrated in Appendix 1. Adaptation also included activities based on a theme that RUG members could related to, such as 'planning a holiday'. We planned activities for pairs or small groups and ensured that the contents of each session could be delivered within 1 hour. The adapted training was structured to be delivered on an 'as needed' basis. For example, RAT on qualitative methods was offered immediately prior to the RUGs PPI activity reviewing a question related to qualitative aspects of SENSE-Cog (

| Individualized support
During introductory meetings, coordinators completed a support and learning needs form (Appendix 2) with individual RUG members to understand their needs to understand how to best facilitate their learning. Coordinators used this information to make individual support arrangements to facilitate each person's involvement. For 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 in large font black print on yellow paper. Requirements changed over time as people's needs changed. Coordinators checked people's support needs on an on-going basis to ensure that appropriate support arrangements were in place.

| Interactive discussions
PPI coordinators delivered RAT to RUGs using interactive discussion. This involved an exchange of ideas where both facilitator and RUG members contributed to discussion of research topics. PPI coordinators used a variety of approaches for presenting key ideas, for example, interactive group work, role-play exercises, case studies and pictures (Appendix 1).

| Informal discussion time
We scheduled informal meeting time before and after the training to encourage informal conversations. Informal meetings allowed RUG members to report, discuss any challenges or concerns and raise any issues after the main meeting. For example, RUG members may have required clarification of the involvement activity undertaken.

| Posting materials in advance of the training
We posted the meeting papers to RUG members 2 weeks before each session, to provide enough time to pre-read the materials.
Sending information ahead of the session allowed RUG members to

| Participants
The study participants were identified through the RUGs. Inclusion 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 and Athens to take part in the training evaluation. 34 RUG members consented to the TARS-section 2 questionnaire evaluation and 23 consented to the semi-structured interviews.

| Design
We adopted a mixed methods approach. We used TARS-section 2 and semi-structured interviews to understand RUG members' experience of the RAT. RAT sessions were delivered approximately every 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 those with memory problems.

| Training acceptability rating scale (TARS)
The TARS is a self-completed questionnaire which takes 5-10 minutes and 'any other comments'. 41,42 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 TARS-section 1, in order to keep the survey simple to complete for RUG members and our key focus was on RUG members' experience of training, rather than their view on social validity. We administered 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, '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 in your role as a RUG member?'. The TARS-section 2 was translated into Greek and French using the 'forward and back-translation' procedure for use in Nice, Nicosia and Athens. 43

| Semi-structured interviews
RUG members who completed the RAT were invited take part in a 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-structured interviews took place 6 months after the delivery of the last RAT session (Table 2). Coordinators conducted one-to-one semistructured interviews with RUG members in each site, and the interviews were audio recorded for transcription. 40 Coordinators then translated the transcriptions into English for qualitative analysis.

| Ethical considerations
The study received ethical approval from the Manchester University Research Ethics Committee. Additional ethical approvals were sought and obtained for each study site, relevant to local arrangements. Informed consent is an important consideration for research with people with dementia, particularly establishing whether potential participants have the capacity to provide informed consent and recognizing any changes in capacity that may develop as the research progresses. 44,45 The capacity of participants with cognitive impairment to give informed consent to participate was assessed on an on-going basis by trained staff. Further details concerning ongoing assessment of capacity are available elsewhere. 40  were analysed thematically. 46 Data management was aided by the use of NVivo software version 11 (QSR International, Doncaster, Australia) and applying the Framework method. 47 The

| Data analysis
Framework method allows in-depth analysis of key themes across the whole data set, as well as between individual accounts using the interview topic guide (Appendix 4) as a starting point. 46,47 JM and SP independently examined the data to identify themes (Table S1: Codebook extract example). JM and SP then met and 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 list of themes with associated codes. The coding framework was emailed to coordinators in Nice, Nicosia and Athens to make suggestions for additional themes and/or combinations of themes.
Any additional themes identified by coordinators were added to the list of themes. The overall data set was then analysed according to the final coding framework. We found the responses to the free-text section of the TARS-section 2 were very brief; mostly only few words. We therefore merged the TARS-section 2 freetext data and interview data to provide a richer understanding on emerging themes.

| RE SULTS
All 34 RUG members consented to participate in the evaluation using the TARS-section 2 41,42 (

| Theme 3: Training materials and handouts
RUG members indicated how the creative approaches of the training 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, perform one-to-one interviews and use a paper survey to collect data on holiday experiences and compare different holiday packages with a set budget to understand the cost-benefit analysis process: 'So, and we did one thing on holidays, didn't we? With James (PPI coordinator) and he…I can't recall the reason why we were at one of the community centres and we were doing the holiday budget and…et cet-  '… the coordinators were always there to explain things that we didn't understand, stopping at different times to make sure everyone are still with it but it wasn't a patronizing thing, the conversations were always two way and I think we were always listened to'.

| Theme 4: Facilitator's role and approach
(I, Manchester, RUG 7, care partner) 'They made it fun to learn, … you didn't make us feel like we didn't know anything, we were encouraged to talk about it and make sense of it and ask questions about things that we didn't understand' (I, Manchester, RUG 6, care partner).

| Theme 5: Group work
Group work was viewed as a positive experience for learning.

| TARS-section 2 open-ended responses on improvements and changes to training
Participants suggestions for improvements to training were varied, such as 'a different approach between the care recipients and caregivers' (Athens T19), 'there is the need for more time on activities' (Athens T50), 'we would like more exercises' (Athens T13).
Others suggested shorter sessions to 'start earlier and finish earlier' (Manchester, T132) and one participant commented 'sometimes too much information' (Manchester, T147). Participants perceived social interaction with learning as an important factor. This finding underlines the importance of the social aspects of RAT delivery. The delivery of training in group settings provided opportunities for RUG participants to share experiences and information with others. Our findings follow studies, 18,48,50 which identified that the learning setting critically encourages discussions between learners and enhances the learning experience.

| D ISCUSS I ON
This approach values RUG members bringing their direct, personal experience of the topic knowledge to the research process and a two-way process of mutual learning. The qualitative findings showed that participants highly favoured group work, in particular the discussions. There has been little research on the recipients' experience of PPI training. There is also debate on whether RAT is appropriate for PPI. 12,16,18 Some have argued that providing training to PPI contributors undermines the validity of lay people's contribution to research. 17,18,33 But lack of training support may be a barrier to effective PPI.

| Strengths and limitations
The

| Reflection
Although we consulted with the RUGs in the planning of RAT, that is, frequency and duration and delivery point of RAT, a more ac-

ACK N OWLED G EM ENT
The authors would like to acknowledge the older people working with us in the UK, France, Cyprus and Greece and SENSE-Cog colleagues in these countries coordinating the Research User Groups.
The authors would like to acknowledge the EQUIP teams' contribution to the adaptation of the research awareness training.

CO N FLI C T O F I NTE R E S T
The authors declare that they have no competing interests.

E TH I C A L A PPROVA L
The study was approved by the University of Manchester Research Ethics Committee (Reference Number 2017-0627-2142). Additional ethical approvals were sought and obtained for each study site (Nicosia, Nice, Athens), as relevant to local arrangements.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data sets generated and/or analysed during the current study are not publicly available due to the privacy of participants and risk of indirect identification by characteristics given in the interviews.
TARS-section 2 data are available by application to Suzanne. • Everyone uses economics every choice we make has benefits and costs.
• Every day we make lifestyle choices.
• Value of expected outcomes or benefits against some set of alternatives (alternative choice given up).
• Utility-preferences/satisfaction over some set of goods and services.
Slide 3 • Health-care providers need to make choices and decisions.
• NHS-To choose between possible interventions, they calculate the Quality-Adjusted Life Years (QALYs). Interventions costing the NHS less than £20 000 per QALY gained are cost-effective. Those 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 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).
Slide 4 • To choose between possible interventions.
• Decisions are driven by the perceived value of the outcome of the various options, what's the cost to society.
• Economics tries to find ways of understanding and quantifying that value and benefits and the utility (satisfaction). A PPE N D I X 2

Research User Group (Site Name)
My Personal details: (ie whether you think the training was of a high quality, and whether you felt it was helpful or not).
For each question please circle the statement that best expresses your opinion.
PLEASE CIRCLE ONE ANSWER:

A PPE N D I X 4 RU G S E M I S TRU C TU R E D I NTE RV I E W TO PI C G U I D E
*Questions to be paraphrased by patient and public involvement coordinators