In order to identify the research priorities for people with a lived experience of mental health services, and their carers, we chose a qualitative nominal group technique as this was deemed to be the most appropriate way to gather a collaborative view. It has been suggested that this technique is more productive and collaborative than other group techniques, and can contribute towards some creative data being gathered , whilst, providing the group with a structured method of brainstorming that encourages contributions from every member of that group.
The normal group technique is particularly suited to this research study as previous research has highlighted the power imbalance that can occur when professionals debate with members of the general public. This method promoted an equal voice, allowing every member to fully participating in group discussion, even those members who might not give their views in other group structures. It is also a useful method when some or all group members are new to the group, although a few members had already experienced this form of research , this was the first time this particular group had come together.
Following on from a short introductory session, participants were divided into three groups, who visited 6 workstations in rotation. Base around the main theme of that workstation, at each ‘workstation’, participants brainstormed and generated research ideas (as a form of mind mapping/collaborative activity). With every member of the group being given the chance to voice their ideas out loud, which was then recorded by the scribe. Each workstation took a similar format where the facilitator introduced the workstation theme and, along with the scribe, encouraged participants to discuss and generate ideas. These ideas were distilled as the discussions progressed and refined into research questions or ideas to be taken forward. Taking direction from the participants, the ‘workstation’ scribe transferred the research questions and ideas onto a flipchart. Upon completion of the workstation phase, three voting rounds were then held in order that the final research priorities could be declared and ultimately taken forward as suitable research topics by the RDG.
Invitations to attend the “Getting Involved in Research: Priority Setting” workshop were sent out to people with a lived experience of mental ill health and their carers (via the SUCPRDG mailing list). The RDG has a Wales wide membership of people with a lived experience of mental ill health and their carers with an interest in mental health research. Personal invitations were also sent to 4 members selected through open opportunity advertisement from the Involving People Network,Footnote 1 where members access the latest opportunities for involvement in research across Wales. A wide range of training and support is offered (with paid expenses and payment for time), together with regular newsletters and bulletins, support and guidance. Open invitations, along with details of the event, were also posted on the Mental Health Research Network website.
Participants were provided with details of the research and the workshop via email, and verbal consent was taken at the start of the workshop, of which 29 participants registered interest across Wales. An information pack was prepared by Hafal, using user friendly language, which was given to participants at the start of the workshop. The information pack was designed to help the workshop participants gain greater understanding of the reason for hosting the event, the structure of the day, the mental health themes under discussion (these had been decided by members of the RDG from amongst their membership). This information pack also contained background information about the structure and purpose of the RDG. The workshop took place from 10.00 until 15.30 on Tuesday, 14th May 2013, at Kegie Building, Caerleon Campus, University of South Wales, Caerleon, Newport. Out of the 29 participants that showed initial interest in the project, 25 (11 males and 14 females) participants went on to attend the workshop, in which 5 were mental health professionals, 20 were people with a lived experience of mental ill health, of which 3 were also carers. As it is not the purpose of this research study to analyses participant’s demographic data, to stay within the set ethical boundaries, apart from noting that all participants lived in Wales and participants gender, no other demographic data were collected.
Health and Care Research Wales (formerly NISCHR CRC) supported people with a lived experience of mental illness and their carers to attend by covering their travel and subsistence expenses and by offering payment for time for their involvement on the day, in line with Involving People Network guidelines.
Workshop proceedings and data collection
The workshops were designed to help and encourage participants to be able to give their views and opinions about suitable priorities in relation to mental health research. Participants were introduced to the workshop aims, and the organisational format, by members of the RDG. This was an informal day where participants could make their views known and speak openly about research issues that were important to them. The role of moderator (s) or group facilitator (s) is critical, ‘especially in terms of providing clear explanations of the purpose of the group, helping people feel at ease,’ and facilitating genuine and purposeful interaction between group members .
Prior to the event, participants received an information pack, containing details about the workshop and the aims and nature of the event. It was important to participant particitation, that this pack to highlighted the open nature of the workshop, including a reminder that everyone within this study is of equal standing. This it was hoped would would be the first step towards increasing involvement and belief in the process. To reenforce the principle of everyone is equal, participants helped to set up the room, and other practical elements of the workshop, working together in partnership to achieve the group aims and to feel part of the event.
The workshop started with a plenary session where participants were again provided with the workshop aims and the organisational format. Following on from this, participants were split into three similar sized groups, and each group was given the opportunity to spend 30 min at each of the 6 individual workstations in turn. The workstations asked for different views on some of the main issues surrounding mental health research, with those issues being identified by the Research Development Group. The ‘workstation’ themes were:
Workstation 1 – Treatment and Recovery
Workstation 2 – Education and Higher Education
Workstation 3 – Stigma and Attitudes
Workstation 4 – Support Services / including Crisis Support
Workstation 5 – Employment
Workstation 6 – Other (Any topic not covered by the other 5 workstations)
Each of the workstations were organised around a workstation ‘facilitator’ and a workstation ‘scribe’. The ‘facilitators’ and ‘scribes’ were experienced members of the RDG apart from a small team (three people) from the Time to Change Wales campaign, who facilitated the ‘Stigma and Attitudes’ workstation.
When participants had visited all of the 6 workstations they were given an opportunity to vote for the research ideas generated. The research ideas were written-up by the individual workstation scribes onto large flipchart paper, and then placed around the room so that participant voting could take place.