Research News

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

Elderly couple looking towards the camera

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

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Research: 'Aspirational' new family project.

Brioney and Isabela on the podcast

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

 

 

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

Woman looking at computer

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…

C-MAB: Collaborative Medication Adherence in Bipolar disorder

heads 2D layered on top of each other

What we did and why we did it

Around half of the people with mental illness do not take their medication as prescribed leading to relapse, hospitalisation and increased risk of suicide. This study aimed to understand what helps and hinders people from taking their medication as prescribed. We conducted focus group discussion and individual interviews with patients with bipolar disorder and their family and friends (n=33). We asked them about their views on what helped or hindered their medication taking. Their responses were transcribed and analysed to identify common themes.

Take away points

1. Mental health medication non-adherence is a significant clinical issue with huge economic impact.

2. Reasons for non-adherence are multifaceted, complex and unique to individual patients.

3. Clinicians should work together to explore those unique determinants and provide individualised adherence support.

What we found

We identified four key themes of medication adherence determinants:

1) The medications itself: efficacy and side effects of medication, pill burden, beliefs and knowledge about the medications, and emotion evoked by medications.

2) The practicalities - forgetfulness, access to prescriptions and medications, incompatible daily routine, practical support from friends and family to take medication or lack thereof.

3) How one sees themselves - not accepting the diagnosis or need for treatment, preference to alternative treatment, fear of stigma, worries of getting unwell and being sectioned.

4) Working with patients – being involved in treatment decision, being listened to, feeling supported by healthcare team and/or family and friends.

What’s Next?

Based on this research we have developed a questionnaire to identify non-adherence and individual determinants of non-adherence. We will be testing this questionnaire with around 500 people taking lithium for bipolar disorder. In the future, we plan to map each of the questions to evidence-based adherence intervention. So, based on patient’s response to the questionnaire, clinician can work with the patient to explore the best adherence support for individual patient.

Download recap as.pdf 431KB

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Research recap: Co-designing Continuing Professional Development (CPD) workshops

old person and nurse

What we did and why we did it

Independent Nurse Prescribers in memory services have a specialist role in an area of rising service demand, due to the increasing prevalence of dementia. We recognise that diagnosing dementia within a prescribing context is complex, nurse prescribers are experienced practitioners who have a valuable leadership and mentoring role within dementia services. Yet, they do not have consistent CPD opportunities for developing their own (or mentoring others) independent prescribing skills. We led a literature review and developmental evaluation as a way of supporting a group of NSFT nurse prescribers to strengthen their collective leadership skills in memory services by co-designing their own CPD workshops.

Take away points

1. Defining the role of nurse prescribers (for example, in reducing waiting times for treatment) generally seems to be difficult, even in one NHS Trust, due to varying memory service characteristics.

2. Nurse prescribers co-designing and leading their own CPD workshops are a sustainable way forward for achieving peer-led CPD relevant to their immediate needs. 3. Peer-led workshops support confidence in transitioning from newly qualified to independent prescriber; building skills in nursing leadership for evidence-based practice in person-centred dementia care and; supporting learning towards applying for Advanced Practitioner level study.

What we found

The final number of included articles in the literature review was 44, all from the UK. Literature addressing CPD issues for nurse prescribers in memory services was non-existent. Studies from different clinical areas suggest a problem with availability of CPD opportunities for nurse prescribers more generally. The link to the paper can be accessed here. We surveyed and/or interviewed NSFT memory service nurse prescribers and other key staff groups, people with experience of using NSFT memory services and their family supporters, to help us refine CPD topic areas. Based on our findings, we co-designed, held and evaluated two CPD workshops with the nurse prescribers over the course of the year-long funded project. We designed the stages needed to further develop a competency-based, confidence self-assessment tool to meet the groups specific CPD needs.

What’s Next?

We hope our findings, which emphasise the importance of developing tailored CPD opportunities based on the direct input, experiences and preferences of the nurse prescribers in memory services who will access them, will lead to effective CPD. This project focused specifically on a small group of nurse prescribers employed in one UK NHS Trust and working within memory services, however theoretically, findings could be adapted to benefit other groups of nurse prescribers. We thank the Burdett Trust for Nursing for funding this project.

Download recap as pdf  425KB

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Research recap: Evaluating Dementia Care Mapping™ training

Old people holding hands

What we did and why we did it

Dementia Care Mapping™ (DCM) enables staff to observe and critically assess the quality of care they provide within their teams from a unique perspective, that of the person living with dementia. DCM is a Quality Improvement tool underpinned by the concept of person centred care, a best practice benchmark referenced throughout the NICE clinical guideline for dementia. Since 2002, NSFT has supported CPD for a number of staff in using DCM with varying levels of expertise (i.e., Basic ‘mapper’, Advanced or Approved Trainer). However, currently, it was unclear whether NSFT staff benefit from DCM training in terms of their sense of confidence and competence in dementia care, and whether the knowledge and skills gained from the training leads to DCM being used in their daily practice. This mixed methods service evaluation aimed to explore these factors and see whether staff felt confident and competent in completing their first ‘map’.

Take away points

1. As a recommendation for DCM practice, a theme identified from attendees’ reflective diaries was challenges in finding the best time and place to provide mapping feedback to their colleagues during busy shifts. This is further evidence that managerial and organisational support is crucial to DCM’s success.

2. Overall, evidence from this evaluation suggests the 4-day DCM training was well received by care staff and was beneficial to the majority of staff’s personal development (sense of confidence and competence) in dementia care practice.

What we found

Twelve staff participants completed the course, and selfreported confidence and competence in dementia care practice were measured at baseline (before the training), post-intervention (immediately after) and follow-up (6 months later). Overall, results indicated that the DCM training was somewhat effective in promoting the attendees’ personal development in dementia care practice. Specifically, for the majority of attendees, their sense of confidence and competence in person-centred dementia care increased following the training and these gains were maintained six months after the training. Three attendees reported no reliable change in their personal development and competence in dementia care practice at baseline to post intervention, and 1 attendee showed a reliable decrease in their sense of confidence following the training (reasons for this remains unclear). At 6 months, 4 attendees provided follow-up data and all successfully completed DCM team practice development ‘cycles’ within six months of the training.

What’s Next?

We thank the Hammerton Court staff who kindly participated in this evaluation project. We hope our findings will help to plan effective training and learning opportunities for staff in person centred dementia care. Future evaluations could consider including qualitative interviews with attendees who report a reliable decrease or no reliable change in their personal development so that factors contributing to this could be understood. Further work could also explore the impact using DCM on outcomes for people with dementia staying on our wards, such as the frequency of adverse events.

Download recap as [pdf] 487KB

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Recap: The BEST study

Logo for BEST study

What we did and why we did it

The BEST (Brief Education Supported Treatment) study explored a new approach to supporting young people who had early symptoms of borderline personality disorder (BPD). Symptoms of BPD include unstable emotions, difficulties getting along with others, risky behaviour and self-harm. The BEST approach involved mental health services working together with schools and colleges to jointly deliver and test a short intervention. This study aimed to find out whether this new joint approach to providing support was practical, liked by staff and young people, and whether it would be possible to run a larger study in the future. Students aged 13-18 years with symptoms of BPD were allocated at random to either receive the BEST intervention or standard care. Information was collected to assess whether it would be possible to run a future larger trial.

Take away points

  • The BEST intervention was delivered successfully within schools and colleges and valued by staff and young people. It represents a promising approach to access timely support for young people who are experiencing BPD symptoms.
  • While the findings of this study provide support for progressing to a larger trial, they also highlighted several changes that would need to be made to make a larger trial successful.

What we found

We found that it is possible to deliver the BEST intervention within schools and colleges. Feedback from staff and young people suggested that the intervention was popular, and was viewed as potentially beneficial for young people, staff involved in co-delivery, and the wider school or college. But most referrals came directly from schools and colleges rather than the NHS, so when schools closed due to COVID-19, the study was cut short. These findings suggest that a larger trial testing whether the BEST intervention leads to improved outcomes and offers value for money would be worthwhile. But the study also identified several practical changes that would be needed in order for a future trial to be successful.

What’s Next?

We plan to use the learning from this study, together with some more work, to design a larger trial of how well the BEST intervention works. We intend to apply for further funding later this year to start this work.

Download recap as pdf 226KB

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Research highlights why some bipolar patients don’t take their meds

People with bipolar disorder may not take their medication because of side effects, fear of addiction and a preference for alternative treatment – according to research from Norfolk and Suffolk NHS Foundation Trust (NSFT) and the University of East Anglia (UEA).

Nearly half of people with bipolar disorder do not take their medication as prescribed leading to relapse, hospitalisation, and increased risk of suicide.

A new study, published today, reveals six key factors that stop people taking their medication as prescribed.

These include whether they are experiencing side effects, difficulties in remembering to take medication and a lack of support from family, friends and healthcare professionals.

A patient’s own beliefs and knowledge about bipolar disorder and its treatment was also found to affect whether or not they take their meds, as well as fear of addiction, and a preference for alternative treatment.

The new study comes from a team of pharmacists, psychiatrists, and experts in behavioural science from NSFT, UEA, Devon Partnership Trust, and the University of Lyon.

Asta Ratna Prajapati, consultant pharmacist at NSFT and a post-graduate researcher at UEA’s School of Pharmacy, led the research. The study was funded by a Health Education England (HEE) / National Institute for Health Research Clinical Doctoral Research Fellowship.

He said: “Bipolar disorder is a mental health condition that causes extreme mood swings that include emotional highs, known as mania or hypomania, and depressive lows.

“Around half of people with bipolar disorder don’t take their medication which can lead to a relapse of symptoms. And this can have a knock-on impact with problems at work, strained relationships with family and friends, hospitalisation, and an increased risk of suicide.

“We wanted to better understand what stops people from taking their medication.”

The research team looked at the evidence for what hinders people taking their medication for bipolar disorder. The research team carried out a systematic review and included 57 studies, mostly surveys and interviews, involving 32894 patients and healthcare professionals. The majority (79%) of the studies were conducted in the USA and Europe.

“We found six key factors that affect whether people take their medication. The main reason being what the medication is like, whether there are side effects, and whether it works,” said Prajapati.

“Secondly, we found that a patient’s beliefs and knowledge about bipolar disorder and its treatment could stop them taking medication.

“We also found that how patients felt taking their medication had an impact – for example a fear of addiction or worry about negative side effects.

 "Other factors included a lack of support, difficulty remembering taking medication and not wanting to take it for reasons including preferring alternative treatment.

“We recommend that the prescribers talk to patients about their thoughts and experiences of the medications they take, paying particular attention to these issues which may stop patients taking their meds.”

The research team are now developing a tool to identify people who struggle to take their medication and their individual reasons. They hope it will help prescribers and patients work together and offer bespoke support to make medication taking easier.

‘Mapping modifiable determinants of medication adherence in bipolar disorder (BD) to the theoretical domains framework (TDF): a systematic review is published in the Psychological Medicine Journal on May 19, 2021

 

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Podcast exploring whether exercise can help teens with low mood?

In this edition of NSFT’s podcast series – Mental Health and You it is the turn of NSFT Research to get behind the microphone.

Kayte Rowe, co-investigator on the READY Trial and Kiersten Wakefield the READY Trial delivery lead come together to talk about why we are researching exercise and low mood in young people for this latest study the READY trial. They chat about how common low mood/depression is in young people, what to look out for if you are a parent, which groups it particularly affects and how activity might help.

Kiersten fills us in on how the trial is run and what is involved and how young people have had an input in the creation of the trial.

Do have a listen to NSFT’s podcast by looking up Mental Health and You wherever you get your podcasts and subscribing (all free) – or download Apple Podcasts or google podcasts if you haven’t listened to one before. It comes out every fortnight from one of four departments within NSFT – Recovery College, School and parent support, Wellbeing and Research.

The research project talked about in this podcast is the READY trial - this study aims to see if physical activity improves the symptoms of low mood in young people aged 13 – 17 years old. Young people that take part will be asked to attend one of three groups twice a week for 12 weeks. The group activities will either be high intensity exercise, low intensity exercise or social non-exercise based activities. If you, or someone you know, is suffering from low mood you may be interested in taking part in this study.

 Any young people interested in finding out more should contact the research team at NSFT by email:  researchinfo@nsft.nhs.uk

Listen now.

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Understanding mental health needs of young people using the ambulance service

Young people tell us their lived experiences of using the ambulance service due to a mental health crisis in a recent evaluation called SEAMLESS. NSFT Research has launched a new short film about SEAMLESS on how we can better understand the mental health needs of young people using the ambulance service.

Despite the fact the ambulance service is on the front-line of providing mental health care for young people in crisis, there is a lack of evidence to guide best practice in this area. This film made by NSFT Research with East of England Ambulance service explains their evaluation, which will offer important insights to guide service development and future research.    

This project was funded by the National Institute of Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. To take part in research do go to Be a part of research.

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