Thoughts ahead of the Enabling Research in Care Homes forum (12th July)

Hospitals in England are facing unprecedented demand that they are struggling to meet. More people are being admitted to hospital in emergency situations that ever before. The increase in demand has led some people to look for admissions that could be considered avoidable. One group of people who have received particular attention are care home residents. Care home residents are amongst the ‘oldest old’ in society – research suggests that over half of all care home residents aged 85 years or above. What is more, care home residents often have multiple health conditions and a wide range of complex health and social care needs.

For some care home residents, the risks associated with a stay in hospital can outweigh the potential benefits. Care home residents are at risk of further physical decline due to prolonged periods of inactivity and the risk of contracting hospital-acquired infections. A transfer to a busy hospital can also be confusing, stressful and associated with cognitive decline. In particular, people with moderate and advanced dementia may become increasingly agitated and frightened at being placed in unfamiliar surroundings, cared for by unfamiliar people.

In recent years a number of NHS organisations have introduced initiatives to reduce the number of hospital transfers from care homes. Published evaluations of these schemes are lacking and hospital transfers from care homes remain poorly understood. A particular gap in knowledge surrounds the views of care home staff. This is surprising given the pivotal role that care home staff play in managing residents health conditions. Often care home staff are involved in initiating a transfer – for example, when a carer notices a resident is “not quite right”.

The research I am conducting as part of my PhD is seeking to understand the work that goes on in a care home prior to a hospital transfer taking place. This includes the chain of events that precede a transfer and the decision-making processes that staff undertake. I have interviewed 30 members of care home staff across 6 care homes in both the East and West Midlands. The findings that I will present during the ENRICH East Midlands forum on Friday 12th July will outline some of my key findings.

In particular, my talk will cover: how do care home staff feel about transferring residents to hospital, who is involved in the transfer process, how do staff decide when to call for help, what factors influence the decisions that care home staff make? In addition, I will also cover a number of practical take home messages for care home staff about how to improve the care of residents around hospital transfers.

My research takes a new approach towards understanding hospital transfers from care homes, by listening to the views and experiences of care home staff. This approach could provide new insights about how to reduce the number of ‘inappropriate’ transfers and be an important first step in developing high quality alternative services for care home residents.

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EnRICH  (Enabling Research in Care Homes) is a network specifically set up to promote research in care homes and provide the opportunity for care home residents to take part in research . EnRICH supports care home staff and researchers to set up studies and organises 3-4 Forums a year .

Post written by Fawn Harrad ahead of the ENRICH forum. Fawn is an PhD student at the University of Leicester. She has previously worked in both the NHS and social care settings. Fawn’s research focuses on hospital transfers from care homes. In particular, she is interested in the work that goes on in a care home before a transfer takes place, including the actions and decisions that care home staff undertake before a resident is transferred to the hospital.

Contact details: fh127@le.ac.uk /  @FawnHarrad

 

 

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When Rest in Peace is not enough:Nursing my tribute to the Late Sarah Wheeler, Founder of The Dragon Café

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When I was a student nurse, I often wondered if there was a space outside the acute mental health wards where people could experience the type of freedom that they talked about away from the mundane, restricted and controlled environment that offered little or no activities to stimulate the mind. I asked for placements in community mental health services, and I was very disappointed to see that some of the nurses in the community mental health services had similar attitudes as some nurses that I saw on the wards. Some mental health nurses are tired with very high levels of empathy fatigue, lack of compassion and the depersonalisation of people that had their identities replaced with labels such as bed number 3, the one that paces about and the one this, and the one that. Thus, when I qualified as a mental health nurse, I knew exactly the kind of nurse that I wanted to be; the opposite of the nurses that I described above. Why do you care so much a nurse once asked? I remember suggesting to some nurses that they should use my method of care, which I refer to as ‘The JoBardi’s Face Off Model of Care in Nursing’. Face Off is when a nurse replaces the face of the patients with the face of a family member, friend or loved one. I am confident that the quality of care will improve if nurses adopt ‘The JoBardi’s Face Off Model of Care in Nursing’.

And so, as a mental health nurse, my search for a community space where people could be themselves without the restrictions continued until 2014 when I joined LinkedIn and wrote a summary with a conclusion that read something like ‘I would like to do a PhD in Social and Community Psychiatry’.  A few days later, I received a message from Alan Sarll, who suggested that I contact Sarah Wheeler and consider researching The Dragon Café for my PhD. I emailed Sarah, she replied, we met, discussed the PhD and the rest is in the past, present and the future that now beholds my PhD and me. I should probably thank the nurses because their attitude motivated me to seek out something different; I found Sarah and The Dragon Café. 

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Last two weeks when I have received the 2018/2019 Tri-Campus Postgraduate Prize, I reflected on how my PhD started, and I took another look at Sarah’s Order of Service which I have had on my study desk since 2016. This year marks the third anniversary of Sarah’s death, and it reminds me of how it all started. You know, the journey that most of us now call Josephine’s PhD, the award-winning presentation Floorboards, Whitewalls and Butterflies, and poster, S P A C E.

I feel extremely privileged to have received the Economic and Social Research Council (ESRC) PhD funding to study The Dragon Café. I am in the final year and still wondering how I got here. Yes, how did this all start? In the last few months, I have been writing my findings chapter, and the meaning that participants attached to ‘a sense of loss’. As I write this blog, I am feeling the loss of someone who gave me something that I did not quite realise was the gift that would take me to several parts of the world where I have attended and presented at 18 conferences, met, interacted and learned a lot from some wonderful people.

Over the years, I have thanked and will continue to thank a lot of people for their support of my PhD journey. Indeed, I would not have started or continued without the ESRC funding, my extraordinarily supportive supervisors; Professor Paul Crawford, Professor Stephen Timmons and Dr Nicola Wright , who nurtured my unconventional way of thinking,  @UoN_SHS and the  @UoNgradschool. More importantly, I want to thank 250 plus patrons including volunteers and gatekeepers who accepted, socialised, participated in activities, interacted with me informally and formally, and provided me with rich and diverse data about their experiences of attending The Dragon Café.

However, the first credit truly belongs to one person; the Late Sarah Wheeler, Founder and Creative Director of The Dragon Café. Therefore, in this final lap of my PhD and the third anniversary of Sarah’s passing, I would like to pay this tribute to Sarah. To say thank you, my friend, and my inspiration, for creating something that made it possible for me to access a crypt in a church where I saw myself in others and others in me through my ethnography of The Dragon Café where I learnt the true meaning of the word; SPACE.

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Josephine NwaAmaka Bardi  is a final year Economic and Social Research Council (ESRC) PhD Student at the University of Nottingham and Founder of the Campaign the Raise Awareness of Mental Health in Higher Education 

She has developed The RAMHHE Research Activity Model for Educators, a novel, non-clinical and pedagogical model for exploring the meaning and understanding of mental health among university students. This will soon be published in the Nurse Educator Journal (Wolters Kluwer Health).

 

 

 

 

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IMH research day 2019 is coming!

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Call for papers!

If you are a IMH doctoral candidate, part of IMH Managed Innovation Networks (MINs), or an early-career researcher (including research assistants, research fellows, research-active clinicians and service users) please consider submitting an abstract for the event to showcase your work. Oral and poster presentations accepted. Send completed abstract submission form found here to Amna Al Shamsi: Amna.Alshamsi1@nottingham.ac.uk by no later than 25 March 2019.

You need to be connected to the IMH to submit and abstract but attendance is open to all. 

Venue: A floor seminar rooms, Institute of Mental Health, Triumph Road, Nottingham NG7 2TU

Date: Tuesday 21 May 2019, 9.00am – 5.10pm

Plenary Speaker: Plenary Speaker: Kate King BSc BA, lived experience adviser on mental health inpatient care, Fellow of the Mental Health Collective

Title of talk:  Self determination: representing lived experience in the MHA review

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Dear All,

The IMH will be hosting its 7TH IMH Annual Research Day to highlight the work of the Institute of Mental Health’s doctoral candidates, IMH Managed Innovation Networks (MINs), and IMH early-career researchers (including IMH research assistants, research fellows, and research-active clinicians and service users). Further information, flyer and abstract submission form can be found here.

We are delighted to announce that the plenary speaker this year will be Kate King BSc BA, lived experience adviser on mental health inpatient care, Fellow of the Mental Health Collective. Kate’s biography and abstract details are below.

Biography: Kate King is a member of the core working group of the Independent Review of the Mental Health Act 2018, working group lead for Patient dignity and safety topic group. Kate is also a member of Nice guideline development committees on Managing Violence and Aggression (2015) and Transitions between Inpatient mental health settings and the Community (2016). Currently service user representative with the Royal College of Psychiatry on their General Adult and Eastern Division committees. She has experience of repeated detention and inpatient life on acute, rehab and secure rehab wards. She is a published poet under her maiden name, Kate Bass, and one of her poems, The Albatross, which explores post-natal depression, is regularly studied by US schoolchildren as a set work for a national competition.

Abstract: Human rights legislation was an overarching theme of the 2018 Mental Health Act Review and people with lived experience were involved in decision making at all levels. What was it like to work within such a project as a patient representative and what insights can be drawn from a year of such intense collaboration.

If you would like to attend please email IMH.Events@nottshc.nhs.uk giving your name, job title and organisation details by no later than 15 May 2018.

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Good practice when researching people with mental health conditions- a snapshot of the first CMHHR seminar!

Have you ever felt a gap in knowledge on best practice when researching people with mental health conditions (MHCs)? As a junior researcher in this area- I certainly have! And I know many of my colleagues have as well. It’s a gap which hasn’t been filled thus far by other, more general skills courses- as after all, there are some more unique factors involved in researching people with MHCs which not everyone has knowledge or experience of.  But fear not- the Centre for Mental Health and Human Rights (CMHHR) have answers! After the festive period of excessive eating and celebrations, they hosted the first of their seminars on this very topic, where we heard from three researcher with first-hand experience- there to offer help in a Q&A. I know what you’re thinking- I can’t believe my Christmas wish came true! How did you know!?! Well if you missed it, not to worry, I’m here to provide a run-down of key points to take away.

First, to introduce the panel members. They included Amanda Keeling from the University of Leeds who did an ethnographic study of social workers- which incidentally involved ethnography of people with MHCs; Jack Tomlin- a fellow PhD researcher here at Nottingham whose research involved interviewing people in a secure mental health facility; and Ben Clubbs-Coldron, also a fellow PhD researcher at Notts- who interviewed people with MHCs in rehabilitative mental health facilities.

Some of their key points of advice I know I’ll be taking away! And broadly they include questions around informed consent, our duty to participants, preparation and more practical advice.

Informed Consent

Amanda expressed how informed consent isn’t always as straight forward as we’d like to think. When working in a busy field- as she was with social work, she often gathered it quickly, opportunistically in some quite stressful situations and at the behest of the social workers. She explains how some people hear and agree to the information needed for informed consent, but don’t truly hear it. If she had her time again, Amanda said she’d be more assertive in the conditions needed for the informed consent and reminisced about how in one notable instance, she removed information on a participant whom she felt wasn’t truly consenting when she went on the client visit with the social worker. All researchers emphasized the importance of researcher intuition and discretion when gathering consent from people with MHCs. After all, part of our job is being trusted to do the right thing!

Duty to Participants

For people with MHCs in mental health facilities who have routinized daily activities and may have been living there for many years- having a researcher enter their lives is a big deal! Over the course of Jack and Ben’s interviews they built relations with their participants, and Jack noted how residents’ faces would light up when he visited the facility! Exiting an environment like that when people have begun to like having you around, should be just as carefully thought out as how you go about entering. Keeping participants up to date with your research, sending them your transcripts and initial analysis, and respecting that they give you an insight into their experiences- their life, was recommended.

With regards to balances in power relations, it’s important to remind participants that you’re not a member of staff and work independently- therefore they won’t be punished for anything they tell you.

Prep and Practical Advise!

One of the first things Ben flagged up in his advice was to take the preparatory classical literature on interviewing people with MHCs with a pinch of salt! In some ways it alienates this group and he urges us to remember that they’re fellow human beings. Jack advised that people wanting to work within secured facilities should factor in the extensive safety training needed before you’ll be allowed access-and to factor that into your time scale. He also reflected on how some interviewees tended to go on long and sometimes delusional (although revealing) tangents, whereas others gave little more than one word answers. He recommended having two sets of question sheets to hand. One for bringing tangents back on track- grouped my main themes or with a significantly reduced number of questions; and the other with more detailed questions for those who don’t give much response.

Some of the topics researched were sensitive and caused participants to become upset. This is something predictable in most interviews but may be more likely/severe for people with MHCs or those living in secured facilities. All researchers remind us to remain human and sensitive to the feelings of participants, whilst not breeching professional boundaries. A tip on how to do this came from Jacks first-hand experience of a participant getting upset in an interview. He gave the interviewee time to experience those emotions, asked if he would like to take a break or end the interview for the time being or altogether. This allowed the interviewee the time they needed, and provided them with time to collect their thoughts before carrying on the interview (if they so wished.)

Of course this was just a snapshot of what was discussed but hopefully it has helped give some ideas to researchers either get getting into, or hoping to get into, this area of research!

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If you’re interested in this content and would like to see what else the CMHHR has to offer, click the link to view upcoming events or follow us on Twitter at @CMHHR1!

This post was written by Grace Carter. Grace is a PhD student whose research focuses on a reformulation of advance planning for people with mental health conditions under the Convention on the Rights of Persons with Disabilities

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Clare Knighton: The challenges of co-production- A Peer Support Workers Perspective

It’s really important that we as service users and patients can talk about service experiences, share common ground and negotiate service improvements together. This, to me, is the essence of co-production: making meaningful change together. However, to do this well takes time and effort all round.

Co-production isn’t, or at least shouldn’t be, a tick box exercise and whilst it may add more time onto a project, the outcome of a better fit-for-purpose service is worth the effort.Often there is a lack of time for people implementing new changes to circulate information about involvement opportunities. True co-production takes time, detailed conversations, time to ‘think’ (often left out of NHS change projects) and just general involvement and communication.

I believe that many people do want to involve patients and service users, however, it can sometimes appear tokenistic – usually due to lack of time. For my own experiences I feel fortunate to have been involved fully in several changes that have taken place in my Trust, however, I know there is always more to do.

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I sit on the community engagement panel and have seen first-hand how our involvement has given fresh thinking and ideas to upcoming projects. Our ‘fresh pair of eyes’ often uncover things that haven’t been thought about which clearly help bring about more robust, patient focused changes.

Co-production will be on the NHS’s agenda more and more and will eventually become ‘business as usual’, but until then, we need to think clearly about involving those whom the service directly affects – ‘no decision about me, without me.’

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Clare Knighton

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Clare Knighton is an accredited peer support worker based in Worcestershire.

@knightonstar

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The cost of persuasive design: digital media use and ADHD

This longitudinal study of American teenagers by Ra and colleagues, sought to explore the association between digital media use and symptoms of Attention Deficit Hyperactivity Disorder (ADHD), as well as explore the relationship between high frequency digital media use and ADHD symptom severity.

The study is topical as all parents worry about the relative amount of screen time versus green time that their children engage in, however on the basis of this study should we be concerned about the relationship between digital media use and an enhanced risk of later ADHD?

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All parents worry about the relative amount of screen time versus green time.

Ra and colleagues study highlights the urgent need to ensure that the design of digital services and products is appropriate for children and young people. Their longitudinal study shows a significant (but modest) association between higher frequency of digital media use and subsequent symptoms of ADHD when measured with Self-Report Form DSM-IV.

The study seems to indicate that the likelihood of developing ADHD symptoms among a longitudinal (24 months) cohort of 15 and 16 years olds (that showed no significant ADHD symptoms at baseline) can increase as a result of high frequency social media activities. While more evidence is needed to understand the impact of persuasive design strategies on children and young peoples’ social, mental and physical development, studies such as this illustrate the potential negative outcomes of excessive use.

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This longitudinal study shows a significant (but modest) association between higher frequency of digital media use and subsequent symptoms of ADHD.

Pervasive design

Pervasive design, a term coined by psychologist BJ Fogg, combines the theory of behavioural design with computer technology (Fogg, 2002). Behavioural design uses a system of rewards and punishments to determine human behaviour patterns. Both persuasive and behavioural designs can be used to manipulate human behaviour so that users act in the commercial interest of others (Kidron et al, 2018). Persuasive design strategies are deployed for commercial purposes to keep users online.

It is neither ethical or reasonable to design services to be compulsive and then worry about the impact that persuasive design may have on children and young people’s mental health due to smart device overuse. Internet Matters (2015) revealed that in the UK, 40% of secondary school-aged children and 34% primary school-aged children “feel worried that they are addicted to the internet” (Clark et al, 2015).

Often British children and young people display absolute devotion to their devices, on the one hand saying they “could not do without their mobile phone for a day” (Murgia, 2017), that they are “best friends” with their phone or don’t feel “right without it”. At the same time, they report being “addicted”, “attached”, “distracted”, “obliged”, “always consuming”, having “no control” and feeling “panicked” (Coleman et al, 2017).

Common Sense Media (2016) found that one third of American children aged between 12 and 18-year-old struggled to cut down time spent on devices; half said they felt “addicted to their mobile devices”.

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Persuasive design strategies are deployed for commercial purposes to keep users online.

Persuasive strategies

The tension between being governed by and devoted to their devices is, in part, a result of the persuasive strategies baked into the digital services that children and young people use. These include:

  • Excessive notifications such as buzzes, pings and all other non-specific alerts
  • Lack of save buttons (so users are forced to stay online to complete a task)
  • Software upgrades that automatically enhance or switch persuasive design features back on
  • Personalised services design to extend use among many others
  • Reward features that release dopamine
  • The need to use social media in order to be social or popular
  • Highly emotive content

All of the above create a digital environment that does not meet the needs of children and young people.

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Digital technology is designed to persuade young people to use it as much as possible.

Monitoring and addressing problems with digital media

Whilst acknowledging the great potential of the digital world, and recognising the value of responsive usage, the technology sector should monitor and address the effects of their products on children and young people and recognise that the options provided to parents and teachers to address digital media overuse are inadequate an ineffective. These include:

  • Over simplistic rules
  • Misconceptions
  • Exaggerated claims
  • Widespread uncertainty that may limit opportunities and creativity.
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We need better ways to monitor and address overuse of digital technology.

Digital media use in young people with ADHD

Digital media use for children with ADHD presents a unique threat that non-ADHD children do not face to the same extent. It is clear that sustained attention is poorer in children with ADHD compared to typically developing children and reinforcement improves sustained attention (Bubnik et al, 2015).

Taken together these findings suggest that children with ADHD may be even more likely to seek out the immediate and intense reinforcement opportunities available via digital media, because they are less likely to find the reinforcement opportunities in their offline life.

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Young people with ADHD are likely to be more susceptible to the intense reinforcement opportunities available via digital media.

Limitations

In addition to the three study limitations already identified by the Ra and colleagues (i.e., ADHD symptom scale, media use measure validity, and sampling), other issues need addressing:

  • The authors do not reflect on the high attrition rate (almost 50%) or the large proportion of participants (48.2%) eligible for subsidised lunch, its impact on sample representativeness and overall results
  • In addition, the authors do not display data regarding the 13th digital media use index score (i.e., Online shopping or browsing).

While we welcome longitudinal studies that explore the impact of digital social media use on children and young people’s mental health and wellbeing, we need to remain vigilant as to the complexity of multiple confounding influences that may be contributing to the Ra and colleagues’ study results.

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Longitudinal studies suffer from problems with confounding, so better evidence is needed before we can be sure of the links between digital media and ADHD.

Links

Primary paper

Ra CK, Cho J, Stone MD, et al. (2018) Association of Digital Media Use With Subsequent Symptoms of Attention-Deficit/Hyperactivity Disorder Among AdolescentsJAMA. 2018;320(3):255–263. doi:10.1001/jama.2018.8931

Other references

Fogg BJ (2002). Persuasive Technology: Using Computers to Change What We Think and DoUbiquity, Volume 2002 December, Article 5.

Kidron B, Evans A, Afia J (2018) Disrupted Childhood. The Cost of Persuasive Design (PDF).

Clarke B, Atkinson R, Svanaes S (2015) How Children Use Mobile Devices at School and at Home (PDF). London: Techknowledge for Schools. September 2015, p4.

Murgia M. (2017) Secret lives of children and their phonesFinancial Times, 6 October 2017.

Coleman S, Pothong K, Perez Vallejos E, Koene, A (2017). The Internet on Our Own Terms: How Children and Young People Deliberate about their Digital Rights (PDF).

Technology Addiction: Concern, Controversy and Finding a Balance. Common Sense Media. Research Brief, May 2016.

Bubnik, M.G., Hawk, L.W., Pelham, W.E., Waxmonsky, J.G.Rosch, K.S. (2015) Reinforcment enhances vigilant among children with ADHD: Comparisons to typically developing children and to the effects of Methylphenidate. Journal of Abnormal Child Psychology, 43, 149 – 161.

Photo credits

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This post first appeared on the National elf service.

It was written by:

Dr Elvira Perez Vallejos is an Associate Professor of Digital Technology for Mental Health and Digital Technologies at Nottingham Biomedical Research Centre (Division of Psychiatry and Applied Psychology, Faculty of Medicine).

Dr David Daley is Professor of Psychological Intervention and Behaviour Change in the Faculty of Medicine & Health Sciences at the University of Nottingham.

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Happy Holidays

Dear reader,

As 2018 draws to a close we would like to take this opportunity to thank you for your support.  We’ve had some great content this year and as always it’s been a privilege to be able to host the research, experience and opinions of our wonderful collaborators & contributors. We hope you have a brilliant festive season and look forward to sharing new content with you in January.

 

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Remember: if you end up with a little time to spare over the holiday season and you would like to write something, please get in touch as we would love to hear from you.

Happy holidays!

IMH blog team

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