Our Service User Research Group

A warm welcome from our Service User Research Group.

We are a small and enthusiastic group with lived experience, who have been working alongside Mark Batterham (Nurse Researcher) on the Psychosis and Urban Living (PAUL) project, since October 2022.

Following the formation of the group, we aspired to learn more about healthcare research and the way lived experience perspectives are central to good research.

This webpage will follow our journey. We will be posting regular updates, our achievements and short testimonials about the importance of being involved in research. We encourage you to follow along with our journey.

Our Journey

Monthly Updates

November 2023

22 November 2023 – Map review and dissemination planning

It was back in March 2023 when we had the mapping lecture and workshop, which was eight months ago and while it had formed part of our thoughts and discussions, particularly for those in the qualitative research design group, we haven’t looked at our maps for a long time. We all embraced the mapping in such different ways and we are now thinking about how all our ideas can be brought together and displayed for others to see. We were joined by someone in the Early Invention for Psychosis team, who has a particular interest in art and it was really exciting to be able to share our thoughts and ideas.

He spoke about how simple ways of displaying artwork can be really effective. One of our service user researchers is going to take a leading role in creating something with everyone’s maps, which is exciting.

Something we didn’t really expect, from reviewing our maps, was the feelings it created within us. Some of us were satisfied with our maps as they were in their original form and some of us felt we wanted to bring them a ‘new lease of life’ and recreated them in to something more refined. We spoke about the feelings and emotions we had, which were recreated as a result of reviewing our maps. This is something we didn’t expect at all.

October 2023

18 October 2023 - World Mental Health Day

Harry provided some feedback on the World Mental Health Day event that took place at Bath City Farm and how it was positive to see a number of organisations present for this. Harry and Mark presented on our project. Luckily, the weather stayed dry!

We had an in-depth discussion about the qualitative study design and discussed asking a healthy volunteer to pilot the proposed approach to see if it is going to be accessible and identify any initial process flaws. In general, we felt this would be positive and Mark is going to explore this further, as he is in discussion with someone who may be interested in this.

It is just over two months until Christmas and we would like to try to get some sessions in before then. In November, we plan to have a review of our mapping session. We will revisit what we did on the wonderfully sunny spring morning in March. This will be done in preparation for a meeting with Gloria, the Geographer from UWE, who joined us on our mapping session and who was our inspiration for this particular design method. We are really looking forward to meeting with her again.

Quarterly Updates

19 July 2023 - Upskilling, considerations and piloting

We spoke about how great it was to have one of the peer researchers helping the other group members with navigating Google Drive. The online IT workshop was a real success. We have spoken about how it may be helpful to have reflections upon our involvement, as this can be good to look back on further along in the study. It can help support funding applications.

Harry has done some fantastic work with getting much of the webpage content ready.

Our qualitative and quantitative research groups are up and running and each group has had an initial session for this and it's looking promising.

We are continuing in the process of reviewing the study involvement values; this month we looked at 'transparency and responsiveness'. We realised it has been hard to set clear expectations for the study as it's an evolving and dynamic project, but we realised that technology has improved responsiveness. However, it has also been a barrier at times, with the struggle of accessing documents online.

We discussed that we would like to pilot the study before we open it to participants, so watch this space, in regard to how this can happen. We are excited as this project is beginning to take form now and our hard work with designing the study has come to fruition.

23 August 2023 - Future Funding and Qualifications

IMG_20190306_143425_WestonSuperMare.jpgToday's meeting was one of organisation and planning and we were looking forward to what the next stage of the study may look like. It was a fruitful discussion and we raised many points, which will require consideration. We thought about the practical points as well as the impact upon us as researchers, in regard to group expectations. We feel it would be good to have a qualification linked to the work we are completing as part of the group and something that we would like to explore further. We feel people may be more likely to continue their involvement or be enticed to become involved in the project if there is some recognition, in the form of a qualification. The next phase of the project will require funding and if we had this, the project could last up to four years. We appreciate the time Mark has been putting into securing funding.

Our quantitative research design sub-group has now completed their survey design work. The qualitative group has drafted a guidance sheet for research participants and developed a ‘place interaction framework model’ based on the work of Swedish sociologist Per Gustafson. They plan to meet on one further occasion, to draft an interview topic guide based on this model.

Reference: Gustafson, P. (2001). Meanings of place: Everyday experience and theoretical conceptualizations. Journal of Environmental Psychology21(1), 5-16.

20 September 2023 - An emotional goodbye as we continue on our journey

Since we started this project, we have had a regular facilitator at the meetings, Tabitha, and she has left her training post with the team, meaning she will no longer be attending our sessions. It has been a real privilege to have her as a part of the group and she is going to be greatly missed.

We discussed lived experience involvement in the next phase of the study and what this could look like, recognising that we are likely to have a research group drawn from the wider AWP region, rather than just the Bath and North-East Somerset locality. It was agreed during this session that monthly online meetings would allow for flexibility around people’s lives and other commitments, which would hopefully mean as many people as possible could attend. We also agreed that the group would meet in person every quarter, to help develop working relationships.

We are keen to have a meeting with AWP’s Research and Development Team, in regard to our experiences of being involved in this project, and are looking to welcome someone to our meeting in the New Year about this. We would love to share our experiences, so that if people participate in research in the future they can find it an enriching experience.

Behind the scenes, Mark had a meeting with Gloria at UWE about a research paper for our mapping session.

12 April 2023 - Mapping the City Reflection

We were delighted to hear that the funding for our involvement work on the project has been extended, until March 2024. We are looking forward to the work and challenges ahead, as well as the opportunity to share our work with others.

During today’s session we spent time reflecting upon the mapping research. A discussion took place into the potential of using body maps to record changing emotions whilst mapping, and we spoke about the possibility of using an animation or flip book to display this. We heard about the meeting that took place between one of our service user researchers, Mark and the urban designers at UWE Bristol. Harry, Mark and one of our service user researchers told us all about the meeting with the Swiss Research Group. Mark has booked his visit to Lausanne for late May, which should be a really fruitful trip.

10 May 2023 - Which side are you, Qualitative or Quantitative?

This was a session where we spent most of the time considering Qualitative and Quantitative research design in more detail. We talked through the difference between Qualitative and Quantitative research, which lead to a better understanding about data collection methods for each type of research. We realised that if we wanted to use a large sample we would need a quantitative design, whereas the information gathered wouldn’t be as rich in detail, which is the benefit of a qualitative method. Everyone engaged really well with the discussion and we realised that whilst people had a preference and more interest in one type of methodology, we all agreed a mixed design would be helpful to fully encompass what we are trying to find out. We spoke about ‘Sequential Exploratory Design’ (which isn’t too easy to pronounce), where qualitative research takes place to begin with, and the information gathered using this methodology informs the design and questions asked using a quantitative research method. We spoke about this being a questionnaire. We are excited that all our hard work is becoming worthwhile and we are starting to see some shape to this project.

7 June 2023 - Delving into the research design

Liverpool library.jpgWe spent some time speaking about the project webpage today and how the content is being drafted.

The qualitative research group has met and they are going to be having a meeting with someone from Exeter University to discuss developing an interview framework and topic guide.

We had a discussion about participatory mapping and how we could incorporate this into our project. We are largely in agreement that it is a good research method / tool and want to make sure that we use it in a way which will gather the richest information from those who take part in our study. Mark told us about the possible research paper that he and Gloria are going to be drafting about the mapping workshop in March, which is exciting. Our project is triggering interest by others and we are all so excited about what this could mean moving forward.

28 June 2023 - Involvement values

Mark told us about his attendance at AWP’s Early Intervention Network meeting, which took place yesterday at Bath City FC. Mark presented on service user involvement in research. It seems that extensive participant involvement in research design is still relatively new. Mark presented the short animation about our mapping research workshop in March, which was beautifully made by one of our service user researchers, and this animation is something we will be using moving forward.

We reviewed our involvement values on ‘respect and support’ today and spoke about the importance of timeliness and how we could try to respect when others are talking and how we could avoid interruption. We spoke about the dynamics of the group and how, on the whole, we work well as a group and try to encourage and facilitate everyone contributing where they wish. However, we realised we aren't perfect, which led to some self-reflection.

We will continue having sub-groups for the types of research design, and it seems we have quite an even split of interest in each group. It's really great that we have such varied skills, expertise and interests within the group. This has been a real benefit, helping this study design be such a success.

11 Jan 2023 - New Year’s reflections

We each went away and read one of the following articles over the Christmas holidays:

  1. Fett, A. K. J., Lemmers-Jansen, I. L., & Krabbendam, L. (2019). Psychosis and urbanicity: a review of the recent literature from epidemiology to neurourbanism. Current Opinion in Psychiatry, 32(3), 232.
  2. Golembiewski, J. (2017). Architecture, the urban environment and severe psychosis: Aetiology. Journal of Urban Design and Mental Health, 2(1), 1-13.
  3. Simmel, G. (1903/2012). The metropolis and mental life. In The Urban Sociology Reader (pp. 37-45). Routledge.

The majority of this session was spent discussing our reflections on these papers, relating them to each other, and to what we know of the urbanicity effect.

The possibility of a blog was discussed, in part as a repository for some of today’s reflections. It could also enable us to communicate our project publicly. We left this for independent consideration, until the next meeting.

We discussed the ongoing difficulties setting up a virtual shared workspace for the project, due to data governance. We agreed our group values and terms of reference, with an agreement to review these in March.

25 Jan 2023 - Ministry for methodology

Similar agenda to our last meeting, but focused more specifically on methodology. Prior to the meeting, we each went away and read one of the following articles:

  1. Ellett, L., Freeman, D., & Garety, P. A. (2008). The psychological effect of an urban environment on individuals with persecutory delusions: the Camberwell walk studySchizophrenia Research, 99(1-3), 77-84.
  2. Söderström, O., Abrahamyan Empson, L., Codeluppi, Z., Söderström, D., Baumann, P. S., & Conus, P. (2016). Unpacking ‘the City’: An experience-based approach to the role of urban living in psychosisHealth & Place, 42, 104-110.
  3. Kamal, P., & Gupta, I. D. (1988). Feeling of crowding and psychiatric disordersIndian Journal of Psychiatry, 30(1), 85.

We provided a brief summary of our papers, before discussing the methodologies, both relating them to our own experience and in terms of their potential application to the design of our study. Article 1 described the use of a wide array of quantitative measures, both before and after an exposure to a busy urban environment. Article 2 described a more qualitative approach in which study participants were, with their knowledge, video-recorded walking autonomously through an urban environment. Afterwards they watched this recording back, while having a discussion with a researcher about their experience. Article 3 involved a questionnaire, mailed out to participants, with diagnosis of a few different psychiatric disorders.

We finished the meeting with a bit more discussion about the blog concept. Harry was to go away and discuss this with the AWP Research and Development department, and look into logistics and expenses.

8 Feb 2023 - The city as a resource

Schwerin.jpgWe covered a lot in the meeting today. Harry updated the group regarding the blog and the meetings he had with the Trust’s Research and Development department. Questions from this process were put to the group for consideration. Harry was to go away and sketch up a website. Mark updated us about his ongoing quest to set up a shared workspace. Following this discussion, we worked on a statement to support a funding application that will enable our involvement work to continue.

Mark then gave an overview of the urban environment as a resource. This included how people find vitalising spaces within the city, and some examples of deliberate efforts to utilise or reclaim the urban environment as a place of healing. Breaking the false dichotomy of City: Bad, Nature: Good.

Two members of our group will meet with urban design and visual methods specialists from UWE soon. An invite to AWP Research Conference was extended to all group members.

22 Feb 2023 - The Project Future

We have now been meeting for a total of four months and are all really excited about how this project is developing and the project’s potential for the future. We have spoken about the different phases of the project and how we envisage our meetings moving forward. We have completed a statement of support for further funding for the project, so we can continue the work beyond the end of March 2023, and we are really hoping we receive this. If successful, we have decided to have twice monthly meetings from April 2023 until August 2023, whilst we complete the research design work and then have six-weekly meetings from September 2023 until March 2024, where we will hopefully begin to concentrate more on the dissemination of our findings and refine the research study design.

We have spent time looking at research questions and considering research aims for the project. We considered that we need to find a gap in the literature and look at the remits we can work within. We discussed how our project has an added benefit of having service user involvement. At this meeting, we decided that we would like to record our session developments during the project in the form of the blog, which is how you are reading all of this information right now. A meeting with urban designers is taking place on 23 March, so watch this space for an update with how this goes.

8 March 2023 - Research plans

It was during the meeting today that we decided to extend our area of qualitative research to include Bath, as well as Swindon and Bristol. We feel this will hopefully give as a more rounded view of urban living. Bath is different from both Swindon and Bristol, and has a high transient student population, as well as many tourist visitors.

During today’s session, we also spoke about developing a research plan, as we are now at this stage of the project. We are going to consider the different parts of the research plan during our future sessions. We again reflected on the project timeline, and we are pleased with how it’s going and it appears that we are within timescales. We spoke about Qualitative and Quantitative research and wanting to consider the benefits of this in more detail and we will be discussing this within the next few months, to inform our study. We are looking forward to the Participatory Mapping Lecture that is going to take place in two weeks’ time, as this may be a qualitative method we would like to try. There is apprehension from some members about this method and what mapping is, although on the whole there is some excitement, and we are all keen to learn some more about this topic.

23 March 2023 – International Research Meeting

Lausanne hospital.jpgOn the 23 March 2023, we met with a team of Swiss researchers and presented to them an overview of the Psychosis and Urban Living project. Mark covered the project timeline and research goals, and then we talked about the practicalities, values and benefits of service user involvement.

Dr Gloria Lanci (Lecturer in Applied Geography at UWE) shared her understanding of the art of mapping as a potential method of data collection in the study.  

Dr Lilith Abrahamyan Empson (Associate Physician) then presented an overview of the Swiss research into Urban Remediation in Early Psychosis. They discussed a theory of nervous stress from cumulative factors and what they’ve termed “City Anhedonia”, as well as pleasurable or restorative parts of the urban environment. Following an exchange of information and experience relating to the design and data gathering, the idea for a recorded walk-along technique to collect themes from the urban environment, was of particular interest to us.

The Swiss team have an advantage of strong connections with their municipality in Lausanne and are working closely with urban planners and their mayor to have a more rapid, positive impact on their urban environment based on their research, but are having difficulty negotiating paid service user involvement due to political or bureaucratic issues. We discussed how since the 1970s, active and vocal patient involvement has resulted in an NHS infrastructure that enables, values, and reimburses input from those with lived experience who offer insight into various areas of NHS reviews and development.

25 March 2023 – Mapping the City: participatory mapping workshop

Brickfields sign.jpg

On a chilly morning in late March 2023, we assembled at Oldfield Park railway station in south Bath. Our collective task for the morning was to ‘map the city’ using a variety of participatory research methods. We wanted to try out these methods to assess their suitability for our proposed study.

A few days beforehand, Dr Gloria Lanci from the University of the West of England’s (UWE) Centre for Sustainable Planning and Environments had joined one our regular meetings to introduce us to the history, principles and practices of critical mapping. We learned that activists and artists began to ‘map differently’ in the 1960s, questioning the established orthodoxy of conventional cartography, and giving form to a ‘geography from below’. Gloria joined us for the workshop, as did a second member of Bath and North-East Somerset Early Intervention for Psychosis team, who kindly volunteered to support us on the day.

One of the reasons for starting the workshop at the local railway station was because it is home to a map documenting and celebrating the history of the neighbourhood. After admiring this map, we set off together to undertake the first activity. This was a short group walk along a pre-mapped route around the local area. We were given printed neighbourhood ‘basemaps’, upon which we were invited to record and locate our perceptions of the urban landscape, as we passed through it. We made sketches, notes and audio clips and took photos to support this task.

GWR.jpgThe second activity was less structured. This time, we decided which route to take and headed off on our own. We created rough freehand maps of our own route and marked our observations and other perceptions along the way. As with the first exercise, we were encouraged to engage with the full range of our senses, not simply our visual impressions of the area.

We concluded the workshop by coming back together as a group, this time in a local restaurant. Gloria helped us to reflect on and discuss our individual and collective experiences of participatory mapping and Mark took notes. We are using these notes to write an article together, documenting our experiences and describing how this work contributed to the research design process. We also hope to exhibit the maps, photos, notes and sketches we produced during the workshop.

12 Oct 2022 - Training session number one

Today was our first meeting as a group. After a round of introductions, Mark Batterham (Project Lead) and Harry (Lived Experience Researcher) delivered a presentation describing the generalised research process and the principles of service user involvement. This contextualised our work as “Study Design”- the second phase of the general research process. This also outlined the reasons for, and boundaries of, service user involvement. Following this introduction, Harry briefly described his own experiences of involvement work, including the first phase of this project, and then turned to the group for a question and answers session.

2 Nov 2022 - Terms of reference / Working Practices

Today we met and discussed our terms of reference for the group. We settled on Service User Research Group (SURG) as a working title - subject to review in March. Using the National Institute for Health and Care Research (NIHR) “framework of good practice for public involvement in research” as a template, we discussed the values and principles we would like to incorporate into our work. These are, in no particular order: Respect, Support, Transparency, Responsiveness, Fairness and Accountability. In the context of accountability, Mark explained how our working group fits into the wider structure of the NHS Trust. We discussed here the possibility of a newsletter, bulletin, or some form of external communication for our stakeholders.

INVOLVE (2016) Public involvement in research: values and principles framework. National Institute for Health Research.

16 Nov 2022 - Training Session number two

Today’s meeting was a research skills training session. The focus was on reading and understanding academic journal articles reporting on research studies, because subsequent work will require reading this kind of material. Mark delivered a presentation explaining the typical structure of an academic journal article, and then we split into two groups for an exercise in reading, summarising and relaying information. This involved reading designated sections from a research article about elderly residents in South Wales not taking advantage of available support with opticians, and then reconvening with the group to discuss our interpretations and anything we found difficult.

7 Dec 2022 - Urbanicity Effect and Psychogeography

Having had time to go away and think about them, we agreed on the group’s Terms of Reference. 

Austria photo from J.jpgMark presented an overview of previous research on the urbanicity effect. It’s been shown statistically that living in an urban environment significantly increases a person’s risk of developing non-affective psychosis (this being psychotic conditions without a significant mood component). This effect is particularly pronounced in adults who grew up in an urban environment. The period between zero and 15 years is generally considered to be the critical period. There has also been research into migrant populations, specifically European migrants to the United States, and the effect relocation can have. From this research, it has been shown that migrants are at an increased risk, but that living amongst a sizeable migrant community seems to have a protective effect when contrasted against living as a small, isolated minority.

Dr Aled Singleton, one of the project’s specialist advisors, joined us for this meeting. Aled is a geographer at the University of Swansea with a particular interest in urban walking. He spoke to us about his academic work and his personal relationship to walking. Following this talk, we had a fairly open discussion about a range of topics. A member of the group asked about methods for actively experiencing urban places because they were revisiting their childhood city soon. Harry reflected on teenage experiences of Urbex (Urban Exploration) and how this links with some of Aled’s theoretical background. Urbex is an abbreviation of Urban Exploration (Urb-Ex), which involves exploring abandoned or derelict man-made places. Often these are urban, but they can be rural - just always man-made. Producing reports is part of it. For example, taking photographs to document the place, and learning/writing a little about the history of the place is encouraged, as part of the process.