SubSleep: Understanding subjective experiences of sleep in people with bipolar disorder

Research Spotlight Blog No.11

Raahat Manrai is a postdoctoral researcher working at the Division of Psychiatry, University of Edinburgh. She has expertise in conducting qualitative research and incorporating lived experience within scientific research using participatory research methods. She is currently working on AMBIENT-BD research study aiming to investigate sleep and circadian rhythms in bipolar disorder.

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Full disclosure before venturing deep into this blog post- I am new to sleep and circadian research! Having said that, SubSleep was a small idea that was conceived while doing some participatory work for the AMBIENT-BD study. The lived experience advisors stated that despite experiencing sleep disturbances their subjective experiences were never inquired by the professionals working with them.

“I have never been asked how I feel when I have woken up. It would be helpful to at least include one word of ‘How do you feel when you wake up?’ in the study.” - Quote from a lived experience advisor

These conversations led to the conceptualisation of the SubSleep study, along with my esteemed colleague Dr Amber Roguski. Whilst going through the sleep literature, we noted that subjective experiences have often been considered inferior and inaccurate. The lack of exploration of the subjective experience limits our understanding of the overall context of the individual, especially regarding their mental health (bipolar disorder, in this case). The real-world consequences of this includes sleep interventions and sleep hygiene guidelines which may be unsuited for, or unacceptable to, people with bipolar disorder.

“I feel really demotivated when people talk about sleep hygiene, as it does not work for me. For example, I need the television running in the background to ensure I sleep well but the sleep hygiene guidelines do not support that.”  - Quote from a lived experience advisor

This lack of nuance within sleep treatment could further alienate an already vulnerable population and can further discourage people to engage with healthcare services. Here, with SubSleep, we aimed to understand the subjective sleep experience of people with bipolar disorder. We aimed to address the evidence gap by collecting and reporting qualitative data on these experiences.

We recruited 30 ‘Experts by Experience (ExE)’ and conducted semi-structured interviews to understand their experiences. To further incorporate their subjective experience, we asked ‘ExE’ to send photographs (either self-captured or computer generated) about their reflections of their sleep environment, the relationship between their sleep and mood and their sleep quality. These photographs aimed to inform our questions in the interviews. Following a positive engagement from the bipolar community, we managed to recruit a diverse group of participants. Our partial analysis highlighted the importance of routine to maintain sleep and sleep being an important identifier in mood stability. The participants also mentioned relying on their medications to gauge their sleep quality. Further discussions involved how majority of them were monitoring their sleep using different gadgets and technologies and how their sleep quality does not reflect “how well they have slept”. Our further steps with this arm of the study include conducting a ‘Community Peer Review Event’ and taking our analysis back to the lived experience experts to understand if our interpretation actually reflects their experience.

Another aim of the SubSleep study was to understand the current trends and guidelines in sleep interventions/treatments. To achieve this, we aimed to conduct a focus group with ‘Experts by Profession’ constituting of but not limited to clinicians, psychologists, psychiatrist, sleep physicians, advocacy workers and support workers. This focus group was conceptualised to reach a balance and consensus between the two expert groups. We are currently recruiting for our ‘Experts by Profession’ participants. If you or someone you know could be relevant or is interested in taking part- please express your interest here.

Blog by Raahat Manrai

This study was funded by the Edinburgh Mental Health Network ECR Seed Fund 2024-2025 round. You can find more information about the entire study on the designated project website here.