Research news

Sarah Rae, a mental health service user has brought together a nationally recognised team of researchers to develop a major new research study. The NIHR funded study called MINDS aims to improve the outcomes and experiences of those being discharged from mental health hospitals.

Sarah has experienced difficulties when discharged from mental health wards in the past. She will now work alongside researchers at Norfolk and Suffolk NHS Foundation Trust (NSFT) on this one-million-pound study. Sarah is determined to use her lived experience to improve services. She will co-lead the research.

“I have had two long stay admissions. On the first occasion I was discharged at very short notice. During a more recent admission I became institutionalised after spending 8 months on the ward. I was terrified of going back into the community. This fear was made worse by the fact that staff did not try to understand my worries or offer any coping strategies. There was no collaborative discharge planning before leaving hospital. The knock-on effect on my well-being and recovery was huge.

When I approached Corinna Hackmann and Jon Wilson at NSFT research they were both enthusiastic about my idea for a research project. They regarded my lived experience to be of equal value to their academic skills. We had a shared vision from the outset. They recognised how service users could benefit from research into how discharge processes could be improved.”

Sarah Rae, Co-lead on MINDS

Around 50,000 people leave mental healthcare hospitals every year. However, a national survey from the mental health charity Mind found that 40% of people leaving mental health hospitals have no plan in place to support them after they leave.

The research team, including leading academics from across the UK, will work with mental health service users and carers to develop a new support package for discharge. This is thanks to funding from the National Institute for Health Research (NIHR).

“No care plan, no follow up. I came out last week, again no care plan, no medication,” Service User

Dr Corinna Hackmann, co-investigator on the MINDS project said, “National Institute for Health and Care Excellence (NICE) guidelines state that discharge planning should include staff working together with service users.

"We know that mental health workers want to create a positive experience for those leaving hospital. However there are many complicated factors that can disrupt this. The aim of MINDS is to combine:

• the expertise of people who have accessed mental health services
• clinicians
• researchers
• engineers
• commissioners
• and managers

to develop solutions.”

“The cutting-edge part of this research is the work we are doing with health care systems engineers at the University of Cambridge. We plan to make a tangible ‘aid’ to help in the discharge process”, explained joint-lead on MINDS Consultant Psychiatrist, Jon Wilson.

"The idea is to adopt industry tools to understand and adapt the discharge process from the point of view of the people involved. This will include why discharges are sometimes not well planned and what people feel they need to stay well after leaving hospital. This ‘Engineering Better Care’ toolkit can be tailored to different situations.

“We are delighted that this systems approach, co-developed with:

• systems engineers
• health and care professionals
• improvement experts
• and patient representatives

can be applied to an important systems challenge such as discharge in mental health,” Professor John Clarkson, Director of the Cambridge Engineering Design Centre at the University of Cambridge

For more information and to register to take part visit the MINDS study page.

Read First service user-led research project for NSFT…

An outgoing reflection of the past year working within the NSFT research department by Sarah St Ledger.

I am just leaving my current position within the NSFT research department to embark on a Doctorate in Clinical Psychology (gulp). So I figured that now was a great opportunity to write about, and reflect upon, the last year within the research team and some of the work that I have been involved in.  

I was employed around a year ago to help the research team design and develop research relating to Covid-19. The Covid work has been fast-paced, diverse and hugely interesting both from a professional and a personal perspective; knowledge is power and at a time when the whole world was grappling with the impacts of Covid it was nice to feel like I was directly involved in the learning.  

One of the first pieces of work I became involved in when I started in the team was the Covid-19 Ethnic Minority Staff Wellbeing Survey whereby almost half of respondents reported poorer mental health since the start of COVID-19, a finding similar to that of the rest of the UK at the time. From this piece of work a dedicated wellbeing officer for ethnic minority staff members was appointed, pandemic wellbeing sessions were arranged by the Black and Ethnic Minority Staff Network, and we are now following up the survey to see if anything has changed over the last 12 months.  

Another memorable piece of work was the Staff COVID-19 Vaccine Intention survey which we completed in December 2020. We knew from the literature that healthcare staff typically have lower vaccine uptake compared to the general population, but our study was able to provide valuable insights into why and what characteristics determined vaccine acceptance, hesitancy or rejection.  Our study demonstrated that vaccine promotion needs to provide healthcare staff with timely and accurate information relating to consent, safety and efficacy through targeted communication strategies to support them with their personal vaccine decisions. The information gained from this study became the catalyst for an increase in targeted communication strategies within the organisation and led to an overall staff vaccine uptake of 94%, a figure much greater than first predicted.  

One of the best things about the last year and the work I’ve been involved in was the ability to rapidly respond to the needs of our staff and service users and I feel proud to have played a small part in the development of knowledge and in seeing that knowledge embedded into clinical decision-making, directly informing the organisational response to the Covid-19 pandemic.  

One thing that has struck me about the last year has been how much I have enjoyed being in a non-clinical, research-based role! I thought working in research would be a bit dry and, dare I say it,  stuffy but it has been the opposite! The department is one of the most dynamic, skilled (brains for days!), forward thinking and compassionate teams I have had the pleasure of working with and whilst I am leaving, I am lucky in that I am not going far and will be able to maintain my connection with them as I continue in my studies. It's been an awesome year to work in research.  

 

Read Hands, face, space … and a programme of rapid response Covid-19 evaluation…

What we did and why we did it

Caring for someone with dementia can be hard, and family carers are much more likely to be depressed or anxious than other carers or non-carers. Unfortunately, family carers are currently under-provided for by NHS psychological services. This is because some carers are unable to travel, others do not have access to skilled therapists and, for others, finding somebody else to look after the person with dementia while they attend psychological services is an issue. Online treatments have the potential to overcome these challenges and improve equity of care. We conducted a preliminary study, funded by the NIHR, exploring whether it is possible to deliver Acceptance and Commitment Therapy (ACT) for family carers of people with dementia online within NHS services and whether this new intervention is acceptable among family carers presenting anxiety or depression.

What we found

The study was successful with more than 100 potential participants being referred to the study in just six months. Thirty-three eligible participants received online ACT, more than we had originally planned.

More than 70% of participants completed seven or all eight online sessions. There was preliminary evidence of improvements in scores of anxiety and depression following the intervention, perhaps more so for anxiety.

Individual interviews with participants highlighted that participants liked the ACT techniques, the user-friendliness of the online system and feedback received from their dedicated online therapist.

Participants also expressed that the intervention led to some improvements in their life such as making them feel it is okay to ask for help and make some time for themselves. The findings revealed that participants also noticed increased activities such as more exercises to take care of themselves due to the intervention.

Take away points

1. Acceptance and Commitment Therapy for family carers of people with dementia can be delivered online within NHS services.

2. The intervention may help cope with carer anxiety and depression, perhaps more so for anxiety.

3. The intervention may lead to some improvements in life such as making family carers feel it is okay to ask for help and make some time for themselves.

What’s Next?

A large-scale trial is now required to evaluate the effectiveness of online ACT and find out whether online ACT should be widely implemented.

The research team will use the findings from this pilot work and apply for a large grant to conduct a large-scale trial

Download the research recap iACT4CARERS.pdf 

Read iACT4CARERS: Online Acceptance and Commitment Therapy for Family Carers of People with Dementia…

What we did and why we did it

Family carers are essential in supporting people with dementia living in their own homes or in care homes. Different challenges in providing care often lead to family carers having a poor quality of life (QoL). We wanted to understand how to best support carers to maintain their QoL while providing support to their family member living with dementia. Carers completed self-reported and interview-based questionnaires to explore the impact of some of the likely things that carers find stressful, for example, low mood, anxiety, hours devoted to caregiving, physical health conditions, sleep quality, psychological flexibility and care recipient’s neuropsychiatric symptoms.

Take away points

1. This project explored potential causes that could worsen the quality of life (QoL) of family carers of people with dementia.

2. 91 family carers with an average age of 69.5 took part in the study.

3. Carers’ anxiety, sleep quality and psychological flexibility seem to have a great impact on carer QoL

What we found

A total of 91 family carers from Norfolk & Suffolk, aged 18 or over, who were currently supporting a person with dementia volunteered to take part in the study. Carers’ average age was 69.5 years old, and they were primarily female family members looking after a person with severe Alzheimer's disease. Carers’ anxiety, sleep quality and psychological flexibility - the ability to do what's most important to you despite the presence of unpleasant thoughts and feelings - were the most important factors that have an influence on QoL.

What’s Next?

We hope the findings from this study will inform the development of new interventions that could help carers maintain their wellbeing across the entire journey of dementia care. Treating anxiety, improving sleep quality and promoting psychological flexibility seem to be critical to support the wellbeing of family carers of people with dementia.

Download the pdf here 177KB

Read Understanding how families support a person with dementia - the iCARE study…

This week in Mental Health and You we hear about a new research project called ASPIRE.

The aim of ASPIRE is to develop a support package to build resilience in young people who have experienced adverse childhood experiences.

Brioney Gee and Isabela Tavares Junqueira from the research team, explain:

• what the project involves,
• the huge role co-production has
• and how the project is going.

The new support package will empower a child’s caregiver – be it their Mum, Dad or someone else who is looking after them – to use techniques to build their child’s resilience, rather than a professional working with the young person. The National Institute for Health Research (NIHR) fund ASPIRE.

We hear from two members of the stakeholder team who have relevant lived experience. Rachel a parent of three and Seb who is a young person giving input on various parts of the project.

The aim of the support package is to support children who have experienced adverse childhood experiences (ACEs) before the age of 18. Experiences such as:

• abuse,
• neglect,
• family break-up,
• being bullied,
• or experiencing a serious illness.

These ACEs have been linked to increased risk of a wide range of negative health outcomes across a person’s life. We also know there is a strong link between the number of ACEs a person is exposed to and their odds of experiencing mental health problems.

However, not all children who experience ACEs develop mental health difficulties. Some young people have social support and personal strengths that allow them to remain healthy despite difficult experiences. Something known as ‘resilience’.

The amount of resilience someone has is not fixed. If we can increase a young person’s resilience, we can decrease their risk of poor mental health.

The co-lead for this project is Cathy Creswell who is based at Oxford University, we also have partners who are based in the US Tim Lomaz and Cleo Berry is based at the University of Sussex. We are also working with co-applicants - two clinicians from NSFT Dr Jon Wilson and Dr Tim Clarke. We also have researcher as someone with lived experience in a parent/carer lead role Tina Walker.

If you want to get involved with ASPIRE then please email

Aspire@nsft.nhs.uk

 

 

Read Research: 'Aspirational' new family project.…

What we did and why we did it

In order to continue to provide services during a time of physical distancing the COVID-19 pandemic resulted in a need to rapidly implement and increase the use of remote healthcare delivery within mental health practice. It is expected that this accelerated implementation of digital care platforms will be maintained and expanded in routine post-pandemic health services. We recognised there was a lack of clear and practical guidance for mental health research staff when undertaking remote research visits.

Key areas to consider Research practice needs to be adapted for online appointments to allow for continuation of ethical practice and informed choice, while maintaining safety of participants throughout the study.

What we developed

We developed guidance outlining the key issues to consider when assessing appropriateness of a remote-delivery research appointments on a caseby-case basis and methods to support the development of a supportive research relationship. We produced a practical checklist to be used and adapted by research nurses undertaking remotedelivery appointments The guidance and checklist are based on the evidence to date and the teams’ own experiences and reflections of conducting remote-delivered research appointments across multiple research studies.

What’s Next?

The guidance and checklist are used routinely in our research department. We plan to undertake an evaluation of their use and acceptability. Poster presentation at the RCN International Nursing Research conference, 7th September 202

Read Practice-informed Guidance for Undertaking Remote-delivery Mental Health Research…