Funder: None

Sponsor: Lancaster University

Start date: 03/04/2023; End date: 02/10/2023

Thank you to everyone who took part in this research study.

We spoke with NHS staff in the UK who provide community stroke rehabilitation. Using online focus groups on Microsoft Teams, we asked about the challenges and supports (barriers and facilitators) to delivering person-centred rehabilitation—care that focuses on the needs and goals of each individual. A total of 15 participants took part, representing five professional groups: occupational therapists, speech and language therapists, physiotherapists, clinical psychologists, and rehabilitation assistants. We analysed the discussions and found four main themes:

Clinicians’ experiences – how staff work to keep rehabilitation person-centred in both practice and services.

Psychological factors – the impact of mental health challenges for patients, and risks of compassion fatigue for staff when person-centred care isn’t possible.

Team working – the importance of different professionals, patients, and families working together.

System-level factors – wider organisational influences on person-centred rehabilitation.

Staff strongly value person-centred rehabilitation and teamwork. However, they noted challenges such as psychological barriers and the emotional impact on clinicians. The study highlights the valuable role of clinical psychologists and the need to include the voices of support staff, such as rehabilitation assistants, in future research.

For more information, please contact Craig Murray (c.murray@lancaster.ac.uk).

Sponsor: Lancaster University

September 2020 – September 2023

This research was completed by Aaron Warner (PhD student), Dr Jasper Palmier-Claus (chief investigator and PhD supervisor), Prof Carol Holland (PhD supervisor), Prof Fiona Lobban (PhD supervisor) and Dr Elizabeth Tyler (PhD supervisor).

We would like to thank all participants who were involved throughout the project.

Public involvement played a crucial role in shaping this study. Two public advisors, Geoff Settle and Verity Rhodes were also involved in the study and provided support and feedback during the study design, data collection, data analysis and dissemination.

The research took place in three NHS trusts in England. Participants were also recruited from charities within the UK. The research aimed to learn more about the experiences of older adults with bipolar disorder and understand what helps this group to age well. At present, there is limited research highlighting the needs of this group.

Study one explored what ageing well means to older adults with bipolar disorder. Photo elicitation interviews were completed. 17 participants selected photographs that represented ageing well with bipolar disorder to them. Study two explored the changing care needs of older adults with bipolar disorder. 16 participants completed biographical narrative interviews and discussed their experiences of care and support since the time they were first diagnosed with bipolar disorder or first received support, up until the date of the interview.

Results highlighted the importance of lifelong learning to improve participants’ understanding and management of bipolar disorder and find balance in later life. Participants indicated that there was a disconnect between the care they desired and the care that they currently received from services.

This research contributed to a better understanding of how to enhance care and support for older adults with bipolar disorder, providing valuable insights for patients and healthcare professionals.

To learn more about the study, please contact Dr Aaron Warner (aaron.warner@liverpool.ac.uk)

The research was sponsored by Lancaster University

January 2023- June 2023

We would like to extend our gratitude to everyone who took part in the research study.

This study was necessary because of problems recruiting and retaining staff working on inpatient mental health wards. This leads to poor outcomes in staff and also for patients. We looked at staff’s intention to leave their jobs. We investigated whether Compassion Satisfaction – positive feelings and rewards associated with caring for others; Compassion fatigue – emotional and physical exhaustion resulting from caring for others without adequate self-care; and a sense of psychological safety – a sense of being able to speak up without humiliation and punishment; predicted people’s intention to leave.

Inpatient mental health staff participated in the study via an online questionnaire. 179 participants took part in the study.

Staff filled in a questionnaire called the ProQOL-5, which measured both compassion satisfaction and fatigue, as well as the Team Psychological Safety Scale. Intention to Leave was assessed by asking participants if they intended to leave their job in the next year due to dissatisfaction.

Results suggest that Compassion Satisfaction, Compassion Fatigue, and Psychological Safety are all significant predictors of Intention to Leave. Twenty-eight percent of the study sample reported an intention to leave their job in the next year. The majority of participants reported moderate levels of Compassion Satisfaction and Compassion Fatigue.

This research has contributed to a better understanding of factors impacting on inpatient mental health staff’s intention to leave their jobs. This suggests that interventions aimed at improving compassion satisfaction, fatigue and psychological safety may reduce turnover in inpatient mental health wards and help to retain staff. The finding that psychological safety is a significant predictor provides a new direction for future research and clinical practice.

Funded by NIHR, hosted by Berkshire NHS Trust, sponsored by Lancaster University

Date study commenced: 1st March 2022

Date study ended 30th June 2025 (Note – impact work is ongoing)

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. A total of 22 individuals with lived experience of peer online mental health forums were involved in all stages of design data collection, and analysis.

The research took place in collaboration with seven online forums across the UK. The aim was to better understand the impacts of using forums, how these are generated, for whom, and under what circumstances. We know that many people are using forums because they are accessible and free, but little is known about how they work, and how they can be improved. The main questions we sought to answer were

RQ1. What are the impacts (positive and negative) of using online mental health forums ?

RQ2. What are the roles of forum moderators and how do they impact forums?

RQ3. How can evidence-based theories of forums be used to codesign best practice guidance and support?

We used a realist approach in which we first developed a programme theory about how we think online forums work, based on a detailed review of 102 documents and interviews with 18 key stakeholders. We then tested our theory using analysis of data from an online survey, interviews, and forum posts. 791 participants who were using forums completed an online questionnaire at 3 timepoints. This provided an overview of user experiences. This analysis was triangulated with in depth interviews with 52 users, and non-users, and with linguistic analysis of forum posts in 7 large forums.

Impacts of using peer online mental health forums were largely positive. Forums that are easy to navigate, make users feel safe to post, and are supported by well-trained moderators offering timely and sensitive responses can help people find new ways to make sense of their mental health challenges, feel understood and accepted in the forum. This can lead to an increase in self-efficacy, reduction in self-stigma, and increased mental wellbeing. Writing about experiences in a forum can itself be cathartic, but when posts have evidently been helpful to other members, posters also benefit from a sense of greater purpose and value. Negative impacts can occur if forums are difficult to navigate or if moderation is unresponsive, insensitive, or inadequate, as users can be left feeling unheard, misunderstood, or overly responsible for the welfare of others.

Forums offer accessible and inclusive ways to effectively support mental health for many people, some of whom may have limited access to other forms of help. The impacts on users are largely positive, but care is needed to ensure forums are well designed and moderators are well trained and supported. These findings are being used to inform codesign of an Online Moderator Toolkit, and Design Guidelines which will be made freely available.

To learn more about this study, and access outputs freely available, you can visit

https://www.lancaster.ac.uk/health-and-medicine/research/spectrum/research/ipof/

Funder: NIHR ARC North West Coast

Sponsor: Lancaster University

August 2022 – August 2024

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. Two individuals with lived experience, one with family experience of pancreatic cancer and the other with personal history of diabetes, were involved in designing the study and reviewing study documents.

The research took place at East Lancashire Hospitals Trust and Lancaster University and was necessary because outcomes in pancreatic cancer remain poor and loss of blood glucose regulation is a major cause of physiological stress. The main question we sought to answer was whether free-living glycaemia was significantly different in those with pancreatic cancer than age-matched control participants.

Ten healthy participants were approximately age and body mass index (BMI) matched to ten individuals with pancreatic cancer who took part in the case-control study. They received continuous glucose monitors and accelerometers to wear for the seven-day period that tracked free-living glycaemia and their physical activity levels during the research, and they were asked to complete diet diaries and some questionnaires based on their background and quality of life.

During the study, all participants were asked to carry out their normal daily routines. The key results showed that individuals with pancreatic cancer experience sustained hyperglycaemia (high blood glucose concentrations) when compared to the matched healthy participants. Blood glucose concentrations were found to be higher in the morning, afternoon and evening, typically when an individual will have consumed food, which suggests that individuals with pancreatic cancer are unable to process glucose from external sources. Blood glucose concentrations were also found to be higher during the night, typically when an individual is less likely to have consumed food, indicating that fasting blood glucose levels, even in the absence of an external glucose source, are higher than matched healthy individuals. This suggests that internal blood glucose control mechanisms are impaired in individuals with pancreatic cancer. Individuals with pancreatic cancer were, however, significantly less active than the matched healthy participants which could impact blood glucose levels and is therefore a limitation of this study.

This research has contributed to a better understanding of pancreatic cancer, providing valuable insights for both patients and healthcare professionals. It has also helped researchers design better future studies.

Further research to explore interventions that would help maintain blood glucose levels in pancreatic cancer or palliative cancer, would build on the findings of this study.

To learn more about this study, you can contact Elizabeth Wrench (L.wrench@lancaster.ac.uk).

The assessment and management of risk is a core component in the delivery of community mental health services. National policies promote the use of positive risk management (PRM); however, its use remains limited, and studies have highlighted barriers to staff implementing this approach. The current study aimed to qualitatively explore how staff working in adult community mental health services understand and utilise PRM. A topic guide was codesigned with patient and public involvement. The author analysed 12 semi structured interviews with community practitioners utilising reflective thematic analysis. Three themes were identified: ‘The System: Working With us or Against us?’, ‘Internal States’ and ‘Staff and Service Users: Working Together to Drive Recovery’. The ability to safely and effectively use PRM was influenced by systemic level pressures impacting staff’s emotional well-being and confidence, connection and togetherness acted as facilitators for a collaborative, PRM approach. The adoption of PRM was affected by access to adequate support and the extent to which staff felt connected to their colleagues and wider team. Staff valued PRM as an approach to working with risk, highlighting the benefits of providing empowerment and developing positive relationships with service users impacting future risk decisions. There were no adverse events of taking part.

Funder: NIHR HSDR

Sponsor: Lancaster University

1 October 2022 – 31 March 2025

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. Three patient groups in designing the initial research questions for the study. Throughout the study, eight individuals with lived experience of using healthcare services were involved in commenting on the research findings and reviewing progress.

The research took place in four regions of the UK, across the north west and north east of England, Lincolnshire and London. It was necessary because there are fewer doctors in some areas of the country, despite the greater healthcare needs of the population, and it affects people’s health because they cannot see a doctor when they need to. The main questions we sought to answer were about where doctors train and then work, and what factors affect where doctors work.

One hundred registered and practising doctors took part in the study as participants. We interviewed these doctors about their experiences. We also analysed the records of NHS organisations, and large numerical datasets shared with us by organisations who are involved in medical education and training.

During the study, we found that the medical workforce is changing, with more women and people from different ethnic backgrounds becoming doctors. We found that where medical students and doctors train has a big effect on their future career decision making. The key results showed that the medical training programme is not always seen as very supportive to doctors with different needs. This affected their decisions about what they wanted to do in the long term, including whether to stay working as a doctor or leave the profession.

This research has contributed to a better understanding of the medical workforce in England, providing valuable insights for both patients and healthcare professionals. It has also helped researchers design better future studies.

Further research to learn more about medical workforce in different parts of the UK or other countries internationally, would build on the findings of this study.

To learn more about this study, you can visit www.lancaster.ac.uk/mappingdoctors

Some women are at higher risk of getting breast cancer. Having surgery to remove their breast tissue, called bilateral prophylactic mastectomy (BPM), is the best way to lower this risk. More younger women are asking to have BPM, but most research has been on older women. We do not know much about young women’s experience of BPM. Therefore, this research aimed to understand young women’s decision to have BPM and the impact this had on their life. One woman who had BPM surgery at a young age helped with designing the research.

The study took place between September 2024-May 2025. Women were found by looking at patient medical records in two NHS Trust’s in England. Seven women who had BPM surgery between the age of 20-26 years took part in an online interview about their experiences. The researcher then looked for patterns (known as themes) in what women said.

The study found thatwomen wished to have BPM at a young age because they did not want to repeat upsetting childhood experience of cancer in their family. It was also convenient to have BPM young because they did not have as many responsibilities (i.e., children). Nobody regretted having BPM young and they coped well with any difficulties. Yet most women felt that professionals did not respect their decision to have BPM due to their young age. This research showed that it is important for young women asking for BPM to receive trauma-informed and person-centred care.

For more information about the study please contact Dr Craig Murray (c.murrary@lancaster.ac.uk).

The research was sponsored by Lancaster University.

January 2025- August 2025

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. Two mental health professionals were asked to give feedback, only one was able to do so in the timeframe available.

Feedback was provided regarding use of trauma-informed and non-judgmental language on participant materials; supporting participants should they become distressed, whether experiences being recounted in interview are the subject of ongoing investigations; issues around recruitment and participants being known to the researcher; and considerations around the best venue for conducting the interview.

The research took place in the north of England and was necessary because we know that person- centred risk assessment and formulation is key to safe and high quality care. Exposure to the suicide of a patient can lead to difficulties in conducting person-centred assessments, but little is known of how staff experience and cope with this.

The main question we sought to answer was ‘How do mental health professionals who have been previously exposed to service user completed or attempted suicide experience the process of risk assessment and management?’.

Ten participants took part in the study. Participants were asked questions about the topic of interest and their attention was drawn to moments when the researcher thought they showed an outward expression of some conflict. It was hoped that this that may lead to a deeper understanding of the conflicts experienced when working with suicidal individuals. Results were analysed using Reflexive Thematic Analysis.

Three overarching themes were generated, relating to emotional responses and conceptualisations of risk after working with someone who has died by suicide; methods by which professionals attempt to cop; and subsequent practicalities of suicide risk assessment and management.

Further research is needed to understand how to better support staff with these experiences.

The Impact of Stigma and Identity on Transitioning from Secure to Community Care among People with Forensic Mental Health Needs and Problematic Substance Use: A Grounded Theory Study

Sponsor: Lancaster University

Start date: March 2024

End date: August 2025

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. A total of 10 individuals with lived experience of mental health difficulties and problematic substance use were involved in sharing their experiences of transitioning from secure care to the community. Their input helped guide the focus of the research and ensured the findings reflected real-world challenges and experiences.

The research took place in the United Kingdom and was necessary because, while secure inpatient services aim to prepare individuals for discharge, there is limited research on how people manage the transition back into the community. The main questions we sought to answer were: What are the barriers and facilitators to successful recovery and community living for individuals leaving secure inpatient services?

Ten participants with experience of this transition took part in interviews. They shared their experiences of life in hospital, the transition period, and maintaining independent living in the community. Some participants reported challenges with identity, stigma, and the risk of returning to substance use, which were carefully explored and understood.

During the study, participants were interviewed either in person or virtually about their experiences, and data were analysed to develop a framework outlining factors that help or hinder recovery across three phases: hospital admission, transition to the community, and maintaining community living. The key results showed that:

• In hospital: Environmental and psychological adjustment were important.
• During transition: Gradual independence supported a smoother move to community life.
• In the community: Connectedness and a sense of security supported identity development and empowerment.

Across all phases, changes over time and experiences of disempowerment influenced recovery.

This research has contributed to a better understanding of how individuals with mental health difficulties and problematic substance use transition from secure care to the community, providing valuable insights for both patients and healthcare professionals. It may help inform future practice guidelines, policy, and the design of therapeutic services.

Further research to explore ways of supporting identity, empowerment, and community integration would build on the findings of this study.

To learn more about this study, you can contact c.lavery1@lancaster.ac.uk.

Katie McAndrew, Dr Fiona Eccles, Dr Bill Sellwood, Dr Helena Rose and Dr Amy Nickson

Sponsor: Lancaster University

15.08.2024 to 21.01.2025

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. An individual with lived experience of psychosis and mental health services were involved in the design and method of the study and reviewed the study materials.

The research took place across two NHS trust and online peer support networks. The research was necessary because engagement with early intervention services can vary. Previous research has suggested this may be because people with psychosis may feel their autonomy and choice is threatened under mental health services. Psychological reactance argues that when autonomy is threatened, people may become motivated to restore their feeling of autonomy through their behaviour. Therefore, individuals with psychosis may disengage with early intervention services to feel they have more autonomy and choice in their life. Engagement is important to understand to improve outcomes for people with psychosis. The main questions we sought to answer were, does autonomy predict engagement in early intervention services and is this relationship mediated by psychological reactance?

82 participants took part in the study. They received a questionnaireduring the research which they could complete anonymously. It asked about their sense of autonomy in early intervention services, their engagement levels and their level of psychological reactance.

Data from the questionnaires was analysed using a mediated regression. The key results showed that autonomy predicted engagement. Autonomy did not predict psychological reactance, and psychological reactance did not predict engagement. There was a significant positive relationship between age and autonomy, suggesting that older individuals felt more autonomous in their care with early intervention services.

This research has contributed to a better understanding of engagement with early intervention services, highlighting the importance of giving people (particularly young people) more autonomy. Further research to look at how particular interventions could be implemented to improve autonomy (such as Shared Decision Making or Open Dialogue approaches), would build on the findings of this study.

To learn more about this study, you can visit Lancaster University Website.

The CI name is Dr Hannah Jarvis and the lead researcher was Mr Daniel Allen from Lancaster University. Funding was secured from Sir Halley Stewart trust.

Our research study aimed to understand how an individual who has had a stroke walks, and what could be the reasons for why people may have difficulty walking indoors and outdoors after having a stroke. If we can better understand how a stroke affects how we are able to walk outside compared to indoors we can develop better rehabilitation programmes to enable stroke survivors be more active and return to work.

We are very grateful to the stroke survivors and their families that took part in this study from two local charities between April 2024 to October 2024. In total 54 people took part, and we collected a range of data from videoing how stroke survivors walk outdoors and asked stroke survivors and their carers for their thoughts and feelings about walking outdoors and what the main challenges were when walking in urban and rural routes around Lancaster University campus.

The key findings from this study almost half of stroke survivors in our study stated that they either did not walk outdoors or that they only walked outdoors 1-2 times per week after their stroke. The most common reason for this is that they lacked the confidence both physically and psychologically to walk outdoors or that they lacked the facilities to make this a more common occurrence.

However, 85% of stroke survivors stated that they see walking outdoors as a major part of their post-stroke recovery, with a further 62% of these stating that they relied on their carers or spouses being with them to be able to walk outdoors. Nearly all stroke survivors stated that their received very little support on how to cope with walking outdoors after a stroke from health care professionals and we want to conduct future research to develop guidelines to help stroke survivors be able to walk outdoors.

Funder: NIHR ARC North West Coast

Sponsor: Lancaster University

April 2024 – July 2024

We would like to extend our gratitude to everyone who took part in the research study.

Public involvement played a crucial role in shaping this study. Two individuals with lived experience, one with experience of pancreatic cancer and the other with experience of participating in lifestyle interventions to manage their condition, along with three healthcare professionals were involved in designing the study, reviewing participant information, piloting the survey and interpreting key themes from the study.

The research for healthcare professionals took place via National Health Service (NHS) Trusts and health-related organisations external to the NHS, and for individuals with pancreatic cancer/their family members/carers via health-related organisations external to the NHS and was necessary because prehabilitation is largely unexplored for individuals with pancreatic cancer. The main question we sought to answer was what are the facilitators and barriers to implementing and engaging individuals with pancreatic cancer in a prehabilitation intervention.

138 healthcare professionals, five individuals with pancreatic cancer and 37 family members/carers took part in the study. They did not receive any treatments/interventions during the research.

During the study, a survey was circulated to healthcare professionals involved in the care of individuals with pancreatic cancer. A separate survey was circulated to individuals with pancreatic cancer and their family members/carers. The key results showed that multidisciplinary team (MDT) cohesion and collaboration; NHS trust engagement, resources, funding, and additional staff; accessibility and avoiding exacerbating health inequalities; community support; dedicated prehabilitation champions; and clinical guidelines would improve the effectiveness of implementation. Individuals with pancreatic cancer and their carers/family members highlighted that to engage with prehabilitation they would require educational support, clear aims and information; mental health support, earlier dietetic support, and a requirement for programmes to be individualised. Considering each of these factors could improve engagement and help facilitate the implementation of future prehabilitation interventions.

This research has contributed to a better understanding of pancreatic cancer and prehabilitation, providing valuable insights for both patients and healthcare professionals. It has also helped researchers design better future studies.

Further research to explore prehabilitation in those with pancreatic or palliative cancer, would build on the findings of this study.

To learn more about this study, you can contact Elizabeth Wrench (L.wrench@lancaster.ac.uk).

Funder: North West Cancer Research (CR1201)
Sponsor: Lancaster University
Start and End Date: August 2020 – September 2021

We would like to thank everyone who took part in this study.

The research took place across the UK to better understand the experiences of women receiving radiotherapy for gynaecological cancers. Many women report feeling isolated, misunderstood, or unsupported during and after treatment. We wanted to know: How do women experience radiotherapy? What challenges do they face physically, emotionally, socially, and in their sexual wellbeing? And what support could help?

Thirty-four women took part. They had all received radiotherapy for cervical, ovarian, uterine, or vulval cancer, some recently and others up to 25 years ago.

Participants shared their experiences through written journals, audio recordings, or video entries. Analysis highlighted a key finding: many women felt they were not truly listened to. Seven main areas were identified where better support and conversations are needed: understanding the treatment itself, managing daily life, sexual wellbeing, long-term side effects, dignity, communication with healthcare staff, and coping with trauma. Physical effects were closely linked with emotional, social, and identity challenges, and poor communication often added to distress.

This study provides a deeper understanding of the experiences of women undergoing radiotherapy for gynaecological cancers. It offers practical insights for patients and healthcare professionals and will help shape future research focused on patient-centred care.

Further work will explore ways to improve communication, dignity, and ongoing support during and after treatment.

To learn more, visit https://wp.lancs.ac.uk/gynae-cancer-narratives/.