The involvement of service users and carers in health services research is increasingly expected (Department of Health, 2001). Service users, carers, academics and health professionals are recognised as having potentially different perspectives to contribute (Reference Townend and BraithwaiteTownend & Braithwaite, 2002). To avoid tokenism, and allow different parties to contribute as equal partners, all those involved need knowledge of the research process. The Academic Unit of Psychiatry at the University of Leeds held a series of workshops to provide research training and to introduce mental health service users, carers and workers to the idea of partnership research.
Public involvement in research can take place at a number of levels, reflecting both the degree of involvement and the philosophy behind it. This has been described as a continuum - from consultation (lowest level of involvement, no sharing of power in decision-making), through collaboration (ongoing involvement, active sharing of power in decision-making), to user-controlled research (highest level of involvement, users have decision-making power) (Reference FaulknerFaulkner, 2004; INVOLVE, 2004). The workshops had a clearly stated aim of developing collaborative research. In particular, the Academic Unit wished to build capacity for user involvement in its own research, by developing unit staff in partnership working as well as by providing research expertise to potential partners.
Method
Workshop content and delivery
The workshop content was planned and delivered by researchers and trainers from the Academic Unit in collaboration with Alison Faulkner, a training consultant who works from a user/survivor perspective. The introductory workshop explained the aims of the workshop series, provided an overview of the contributions service users, carers and workers can make to research, and encouraged those interested to attend later workshops. The next three workshops covered stages of the research process: beginning a research project and asking answerable research questions; qualitative and quantitative research methods; dissemination and turning research findings into change. The final workshop covered topics requested by participants, along with a discussion of how to move the collaboration forward.
Every workshop included taught sessions and small group discussions, with feedback of discussions to all participants. At each of the workshops there were external speakers presenting their own experiences of service user or carer involvement in research. All presentations included speakers who were service users or carers, and all had experience of mental health research.
Recruiting workshop participants
Workshop organisers visited a variety of service user and carer groups through liaison with Leeds Mental Health Teaching NHS Trust (LMHT) and local voluntary groups. Posters were distributed by patients, staff at LMHT, voluntary groups and social services. Advertisements were placed in newsletters published by LMHT, local voluntary groups and the University of Leeds.
Practicalities
Workshops ran from 11 a.m. to 3 p.m. to allow people with school-age children to attend, or for carers to make alternative care arrangements. Regular breaks were scheduled, and a mixture of taught sessions and group discussions planned, to maintain interest. A city centre venue was selected as this was easy to reach by public transport, had parking available and disabled access. Service users and carers were paid workshop attendance fees as well as travel and care expenses. (It is recommended that service users and carers should be properly compensated for their involvement in research activities (Northern Centre for Mental Health, 2002).) Workers were not paid for attending, but they were not charged for the training.
Results
Attendance
There were 39 people that attended the introductory workshop; 15 participants identified themselves as service users, 4 as carers, 14 as mental health workers and 1 as a researcher. The other 5 participants considered themselves to be in more than one group, including the service user category. We had anticipated that some people would choose not to become involved in later workshops, and this was the case. Later workshops had between 27 and 36 participants, each with a mix of people from different groups. There were consistently more service users than people from other groups, with mental health workers having the highest drop-out rate (50%). In order to assess recruitment methods, we asked: ‘How did you hear about the workshops?’ Of the 38 responses, 12 had seen posters or leaflets, 12 heard by word of mouth, 6 from e-mail contacts, 5 heard through users’ or carers’ groups and 3 from newsletters.
Feedback
The workshop series was evaluated from confidential, individual feedback forms completed at the end of each workshop, and from group discussions during the final workshop. Return rates of feedback forms were high, ranging from 68% to 78%.
Feedback from each of the first four workshops was used to inform the next workshop. For example, we rearranged seating in the venue to ensure participants were better able to hear during talks and discussions. We had planned to allocate people to a particular group for discussions throughout the workshop series, but as people requested the opportunity to mix with others, participants were allocated to different groups for each workshop. During group discussions in Workshop 4, participants suggested topics for the final workshop, and sessions on research ethics and funding were presented.
Throughout the workshops we encouraged participants to highlight any jargon or terminology that they did not understand. Feedback reflected that presentations and taught sessions were generally understandable, although some research terms were used which were considered jargon. It is likely that some terms were not explained adequately but were not brought to our attention. Participants felt they had been given appropriate levels of information, and appreciated the talks and presentations by external speakers.
Feedback at the end of the workshop series showed that participants felt more positive about partnership research after attending. In general, participants thought all represented groups had something to contribute to services research and to mental health research more generally. One service user participant and one carer thought that it would be easier to conduct research training with service users separately from other groups. However, all other participants thought it beneficial to have representatives of all stakeholder groups present.
We received some negative feedback about the venue, which was the conference facility of a theatre. In particular, participants found noise from other events within the theatre distracting and this made it difficult for them to concentrate. We addressed this as best we could within the constraints of the venue, and made some modifications to catering arrangements in accordance with feedback.
Outcomes
The workshops aimed to provide information about the research process and basic training to service users and carers to facilitate their involvement in future research. Feedback showed participants thought they had better understanding of, and more ability to be involved in, the research process following the workshops. Feedback at the end of the last workshop indicated that participants were keen to get involved in research, and they contributed to discussions of how to move forward to achieve this.
As a direct result of the workshops some participants have become involved in externally funded collaborative research projects at the Academic Unit. A service user and carer research group has been formed, which aims to develop further collaborative research and continue to build the research skills necessary for successful collaboration. Some workshop participants have become involved in research activities outside the unit. However, other participants have chosen not to get involved in research, one reason being because they felt it did not have an immediate impact on services.
Discussion
The workshops achieved the key aim of increasing participants’ knowledge of the research process, and facilitating participants’ involvement in research. Negative comments were almost exclusively about the venue and catering. This might be because participants placed more importance on these things than on the course content, or that they were satisfied with the workshop content, or that the problems with noise in the venue distracted from the training content.
The low number of carer participants was partly owing to fewer applicants and partly to cancellations. Shorter time commitments may improve carer involvement in any future events of this nature. To reduce drop-out rates in workers, consideration would also be given to charging this group a cancellation fee and highlighting future research opportunities for workers.
To capitalise on the investment made in such training events, funding needs to be set aside for immediate follow-on research opportunities. In our workshops there was no shortage of commitment or ideas for moving forward. Although funding can be sought for specific future projects, creating the opportunities to maintain contacts and discuss research ideas also requires resources.
In conclusion, research training, although important, can only contribute partially to involvement in partnership working. However, the workshops created an environment that allowed service users, carers, academic researchers and workers to discuss their differing perspectives, and question the agendas of other stakeholders, in a setting outside clinical services.
Declaration of interest
None.
Acknowledgements
The workshops were funded by an Economic and Social Research Council (ESRC) Seminars Award, and workshop organisers’ time was funded by the Academic Unit of Psychiatry and Behavioural Sciences, University of Leeds, UK.
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