Two members of the Circadian Mental Health Network LEAP delve into the process of choosing the top 10 body clock, sleep and mental health research priorities. They also share why it was a good example of lived experience involvement in a priority setting partnership.
The Circadian Mental Health Network is a network of experts, including researchers, clinicians and people with lived experience, aiming to drive collaborative research on sleep, circadian rhythms and mental health.
The network has a lived experience advisory group (LEAP) involved throughout. As part of this work, several Network LEAP members also became rotating members of a steering group for a James Lind Alliance Priority Setting Partnership (JLA PSP) exercise.
Find out more about the JLA PSP here
The aim of the PSP was to get lived experience, patient, carer and clinical perspectives on which unanswered questions on mental health and the body clock were most important to prioritise in research.
It was also a strong example of how to include people with lived experience in all aspects of a PSP exercise.
Alongside the research team, the JLA PSP Steering Group helped gather the information and prioritise the questions.
In today’s blog two LEAP members share why they felt it was a particularly good example of lived experience involvement in research.
Candy
Over the past nine years (since coming out of hospital following a long inpatient admission) I have been involved in a lot of different projects in mental health services that have sought to include the voice of “lived experience”, with varying degrees of success.
Sometimes it seems as if the service user involvement is an afterthought, bolted on to the end of the project, as in “we’ve come up with a plan for improving the service, let’s see what the service users think of it”.
Sometimes it’s just a case of “let’s have one service user at every planning meeting so we can tick that box” (which can be a lonely experience). This has sometimes felt disempowering and disappointing.
Rarely has it seemed to be such an integral part of the process as it has been with this research project, where a whole team of people with lived experience of the issues with mental health and the body clock were recruited right from the start and given an equal say in the making of every decision.
‘Someone like me would be able to understand’
From the start it felt as if the PSP Steering Group was true .
In our discussions of how to formulate the survey questions it seemed so appropriate to solicit the thoughts of exactly who would be answering and who might not understand the technical terms that are second nature to the scientists and researchers.
Find out more about the survey here
I felt that I was able to help with choosing the language and wording of the questions that someone like me would be able to understand!
It was fascinating to work with the other members of the LEAP who were from completely different backgrounds and ages to me, with different diagnoses, struggles and areas of concern, but all with a common interest in wanting to influence research into mental health and the body clock.
I’m sure I was not the only one to feel very apprehensive and under-confident at the start of the project, but the support and encouragement of the McPin Foundation workers and the university project lead created a very safe space to contribute ideas and gradually gain in confidence.
In particular, the to family, friends, other service users and support groups was a challenge that took me out of my comfort zone and increased my confidence.
I would normally find it very difficult to talk to people outside my immediate circle but I found that that I was so personally invested in this work and getting people interested in the survey, that I was able to overcome my fears and “do the hard thing”.
LEAP activities to promote the survey
- Sharing with friends and family
- Visiting local community hubs
- Putting flyers on notice boards
- Answering questions about the survey
- Digital promotion via WhatsApp and social media
A personal project
Having lived with bipolar disorder and associated sleep and body clock disruption for so long, I am really keen to understand what is going on in my brain and body when my mood disorder wrecks my sleep patterns, as well as what on earth I can do about it – and I know the only way to find out is for someone to actually run the studies and do the research!
When I was an inpatient in hospital being treated for bipolar disorder, my ward was full of fellow patients totally unable to sleep at night without powerful medications to knock us out or, alternatively, so depressed that it was difficult to do anything other than sleep at any and all times of day.
So I was delighted that, by the end of the workshop, the question about bipolar and the body clock was
See the full top 10 priorities at the end of this blog.
Additionally, as a woman “of a certain age” I had also discussed with the group the importance (to the 50% of the population affected!) of understanding the relationship between menopause and perimenopause and disruptions to sleep and the body clock. I was very happy that this very question also made it into the top 10.
I’m really looking forward to seeing what future researchers discover about all of the questions that been put forward for investigation and reading about their exciting discoveries, which I hope will result in useful strategies that people like me can use to relieve some of the suffering we experience and improve our lives.
Anonymous
When I first joined the Network LEAP, I wasn’t exactly sure what to expect. My role as a for this Priority Setting Partnership (PSP), however, took me on a very informative and enriching journey.
What began as a curiosity grew into a deep involvement in work that allowed me to feel both heard and empowered.
Effectively representing the public
The steering group I was part of was extremely diverse, and contained a whole range of people, including those with lived experience of mental health difficulties and disrupted circadian rhythms, carers for individuals with lived experience, and clinicians who worked in the fields of mental health and circadian rhythms.
I felt as though this diversity ensured that the group was able to effectively represent the public, making sure each individual research priority was both relevant and meaningful.
Throughout the entire priority setting partnership, I felt as though the process was highly focused on trying to have a real-world impact, which was lovely to see.
It was admirable to see the amount of effort that was put into ensuring that the voices of those with lived experience were central to the entire process.
The researchers were excellent at making sure we were comfortable as a group, allowing us to fully express our opinions and feelings.
They were always open to discussion, whether it was to do with the research or even about things that may have potentially worried us.
Having impact on the project
I personally had a lot of direct impact on the work that was done, such as co-designing survey materials and refining the research questions suggested for this PSP.
I gained a new respect for research, due to how broad and complex the project is. Both the variety and volume of questions was just astounding.
It was fascinating to see how different people’s lived experience and backgrounds influenced the direction of the project.
I am a medical student, so being able to understand everyone’s perspectives is something that is personally valuable, and something that will benefit my future practice.
This entire project was underpinned by collaboration and being able to engage in deep discussions with others to reach a consensus was very satisfying.
Choosing the final priorities
One particularly meaningful and enjoyable experience was taking part in the final face-to-face workshop.
This entire project was underpinned by collaboration and being able to engage in deep discussions with others to reach a consensus was very satisfying.
It felt as though this final event was a conclusion of everything we worked towards, in a way that felt purposeful. Having the opportunity to meet fellow contributors in person added another dimension to the experience and gave an even stronger sense of shared purpose.
During this final workshop, I found it particularly interesting how different everyone’s top 10 priorities were, thus demonstrating how influential personal experiences can be.
The final priorities ranged from understanding how age and life stages affect mental health and the body clock, to exploring how trauma, menopause, and neurodivergence influence circadian rhythms.
One priority that stood out to me was how following one’s own natural rhythms could impact mental health, as it seems to promote a more individual and compassionate approach to wellbeing, while also showing a potential benefit in deviating from conventional norms.
Overall, despite the majority of my top priorities not making it into the final list, I felt as though the discussions were very transparent and respectful.
See the full list of priorities below.
The power of collaboration to improve lives
Looking forward, I hope that further research in this area continues. I believe it is essential that research remains not only scientifically grounded, but also informed by the realities of those with lived experience.
I believe that this project showed me the power that collaboration has in its potential to improve lives.
As a medical student, I look forward to taking part in future research projects, thus allowing me to help others while increasing my own awareness and knowledge surrounding the problems that many of us face within our lives.
Top 10 priority questions about the body clock, sleep and mental health
- Does the interaction between mental health and the body clock vary by age, especially during different life stages?
- What strategies (including medications) are effective in treating disrupted body clocks co-occurring with mental health issues?
- What is the relationship between the body clock and mental health in neurodivergent individuals and does body clock disruption worsen mental health in these individuals?
- What is the relationship between a disrupted body clock and bipolar disorder, or between a disrupted body clock and psychosis? What are the mechanisms involved in this?
- What societal and/or policy changes can help prevent mental health issues for, and reduce stigma towards, extreme chronotypes?
- What is the relationship between (peri)menopause, mental health and body clocks?
- How does mental trauma (e.g., grief) affect the body clock? How can this be managed?
- Would it be better for a person’s mental health to follow their own (natural) rhythms or to follow more typical sleep patterns and/or social patterns?
- What is the relationship between seasonal changes, body clocks, mental wellbeing and mental health issues?
- Can mental health difficulties, such as anxiety or depression, cause disruption of the body clock at a molecular level, or are these driven mainly by behavioural factors?
