A Narrative Synthesis of Women's Out-of-Body Experiences During Childbirth

Lynda Bateman, Catriona Jones and Julie Jomeen have published:

A Narrative Synthesis of Women's Out-of-Body Experiences During Childbirth in: Journal of Midwifery and Women's Health 

One social hour a week in dementia care improves lives and saves money

Person-centred activities combined with just one hour a week of social interaction can improve quality of life and reduce agitation for people with dementia living in care homes, while saving money.

The findings from a large-scale trial led by the University of Exeter, King’s College London and Oxford Health NHS Foundation Trust were presented today (July 16) at the Alzheimer’s Association International Conference 2017 (AAIC). The research was funded by the National Institute for Health Research (NIHR).

The trial involved more than 800 people with dementia across 69 care homes in South London, North London and Buckinghamshire. Two “care staff champions” at each home were trained over four day-long sessions, to take simple measures that involve talking to residents about their interests and decisions around their own care. When combined with just one hour a week of social interaction, it improved quality of life and reduced agitation.

Importantly, the approach also saved money compared to standard care.  Researchers say the next key challenge is to roll the programme to the 28,000 care homes in the UK to benefit the lives of the 300,000 people with dementia living in these facilities.

Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “People with dementia who are living in care homes are among the most vulnerable in our society. Incredibly, of 170 carer training manuals available on the market, only four are based on evidence that they really work. Our outcomes show that good staff training and just one hour a week of social interaction significantly improves quality of life for a group of people who can often be forgotten by society.”

Dr Jane Fossey, at Oxford Health NHS Foundation Trust, said: “Taking a person-centred approach is about really getting to know the resident as an individual - knowing their interests and talking with  them while you provide all aspects of care. It can make a massive difference to the person themselves and  their carers.. We’ve shown that this approach significantly improves lives, reduces agitation and actually saves money too. This training must now be rolled out nationwide so other people can benefit.”

The results are the findings of the Improving Wellbeing and Health for People with Dementia (WHELD) trial, the largest non-pharmacological randomised control trial in people with dementia living in care homes to date.

The project included collaboration from University College London, the universities of Hull and Bangor, and Alzheimer’s Society.

Video of care home dementia champions speak emotionally about the impact of theWHELD training programme.

This project was funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (grant: RPPG-0608-10133). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. NIHR | National Institute for Health Research

For further information:

Louise Vennells

Press and Media Manager

University of Exeter Medical School

+44 (0)1392 724927 or 07768 511866

A dissemination event for the joint CCG funded project ‘Service Users’ Perspectives on Accessing Type II Diabetes Mellitus Services in Hull and The East Riding of Yorkshire’

Professor Liz Walker writes:

This project (a research partnership between HYMS and the School of Health and Social Work) explored the experiences and views of people living in Hull and the East Riding of Yorkshire who have type II diabetes.

The project team of Professor Thozhukat Sathyapalan, Professor Liz Walker, Janine Keating and Lisa Baldwin delivered a joint dissemination day to the service user participants and to clinical colleagues from across both regions.  For those people who contributed their time and experiences to the project, the event offered an opportunity to explore some of the project’s key findings, which focused on the facilitators and barriers to effective management of type II diabetes.

The morning session (for service user participants) was particularly well attended and generated interesting debate about the ways in which service development in Hull and the East Riding of Yorkshire could be further improved.

As the project reaches its conclusion, the team would like to thank everyone who contributed time and effort to participate in the project and the University of Hull for hosting the dissemination event.

The full report will be published in September 2017. A link to the text only of a service user feedback brochure can be found here. For a copy emial Liz Walker.

Brochure link

A Summary of Service Users’ Perspectives on Accessing Type 2 Diabetes Mellitus Services in Hull and the East Riding of Yorkshire.

The Hull and the East Riding of Yorkshire Clinical Commissioning Groups, who are responsible for the planning and commissioning of health care services for your local area, funded the University of Hull in order to find out the experiences and views of people living in Hull and the East Riding of Yorkshire who have type 2 diabetes. We did this by interviewing 10 senior care home staff, 11 groups of service users, a total of 48 people, across the age ranges of 18-39, 40-64; and 65+, and 5 individuals who had been recorded as not attending some appointments. We then used what people with type 2 diabetes had told us to develop a questionnaire. The findings from the questionnaires were combined with the findings from the interviews to create a better understanding of the barriers people with this condition face when accessing services. This research study was sponsored by Hull and East Yorkshire Hospitals NHS Trust and the research team consisted of Professor Sathyapalan, Professor Walker, Janine Keating and Lisa Baldwin. We would like to thank everyone who was involved in this research study and we are pleased to share a summary of the interviews with you.

 

The Impact of Type 2 Diabetes on Daily Life.

When people were first diagnosed as having type 2 diabetes some were shocked and surprised, or frightened, whilst others talked about their disbelief at first followed by a sense of denial. Some responded with urgency initially, which lessened over time, whilst others did not understand the seriousness of being diagnosed with type 2 diabetes. Some people completely changed their lifestyle; their diet and the amount of exercise they did, as a result of being diagnosed.

People spoke of the symptoms associated with type 2 diabetes that they had experienced, such as mood swings, thirst, tiredness (which often led to sleeping throughout the day), problems with nerves (neuropathy), excessive sweating, difficulties with their mobility and vision, tooth loss, amputation of toes, and an increased need to go to the toilet. These symptoms were sometimes intrusive and disruptive, and impacted negatively on the individuals’ ability to participate in social events and do other activities, such as driving long distances. This often led to feelings of loneliness and isolation:

“. . . but the reason why I don't go out because it's a bit embarrassing that you're always off going to the loo, er.”

Poor mental wellbeing was a significant issue for people living with type 2 diabetes. Depression, anxiety and fear were commonly experienced, for example, as a result of worrying about becoming hypoglycaemic. Low self-esteem, self-consciousness, embarrassment and shame were experienced too, particularly around weight gain, social isolation and tooth loss. Type 2 diabetes was sometimes overwhelming and viewed as burdensome and something which prevented the participant from moving forward in their life.

Not working, which sometimes led to boredom and isolation, was hard for some participants to manage alongside their condition. For some there was a loss of independence due to no longer being able to drive as a result of their type 2 diabetes and sadness was felt at not being able to do things that were once possible, such as playing with children and grandchildren. There was a worry and a fear of what a future living with type 2 diabetes would hold for themselves and their livelihood, such as the loss of a driver’s licence or complications leading to amputation:

“It does worry me, you know, worries me for my family at times as well, you know, we, what, how bad I'm going to get but nobody there seems to have an answer, you know and like I say it's a big worry, especially with a family and I don't want to die young, I want to see my kids grow up.”

In order to protect loved ones, some people with type 2 diabetes did not want to share their anxieties or distress with their partners and other family members.

Some of the participants cared for children, parents and partners, some of who were unwell or had disabilities themselves. Type 2 diabetes made these caring responsibilities more challenging. Those in the groups aged between 18-39 expressed a determination to live differently and make different choices around food, compared to what their parents had done, or still continue to do:

“my parents are both type two diabetics and in their mid-sixties, erm, and they have not made good choices, changes, they’ve not made changes to their diet, they’re still eating high level crappy carbs, big massive meals…. I’m shocked on reflecting that they have not made better choices before now because I didn’t really understand what diabetes was before….. who knows maybe I wouldn’t be sitting here right now…… I’ve got to stop the circle being repeated.”

Type 2 diabetes, as well as having to monitor the condition, often became central to people’s lives and thoughts, sometimes even dominating and controlling:

“And it has took over my life and you do become obsessed but you become obsessed to the point that you can cope with it easier, because at first it is upsetting that you're not going to eat stuff like you used to eat, you know, I mean even now, I can walk past a baker's and think God, I could die for a piece of that bread with butter but do you want to live healthy or do you want the bit of bread?”

“There's a point where diabetes takes control of you.  I think once you get to know that, and you have your blood machine as well. That controls me, my blood machine controls me. Tells me what to do.”

However, participants also spoke of trying to remain positive and not to let diabetes dominate their lives:

“My life is my, diabetes is mine, I don't allow it to own me, that's the big thing with my opinion and I try to look for the positive sides on everything, even if that water was to fall, fall over and go over there the positive side, it didn't get me. Don't, life, I don't let the diabetes rule my life.”

Career and work was often disrupted and often challenging to manage alongside type 2 diabetes. In some cases, certain types of occupations were seen to contribute to the condition, for example, gaining weight whilst doing a non-active job or missing meals, not eating at set or regular times, or eating in a hurry, whilst doing shift work or doing jobs which involved driving:

“I used to drive taxis for a long time and weight creeped on, eating junk food and, and stuff like that, snacking, sat down for long periods, no exercise.”

Management and Maintenance of Type 2 Diabetes:

‘We are coming more and more our own doctors’

Participants spoke about relying on their own intuition and what their bodies were telling them, alongside weight watching and monitoring themselves;

“every single day I do my blood sugar first thing in the morning, I do my blood pressure first thing in the morning, I then always have my breakfast and I know in my own feeling whether I'm, whether I'm okay or not.”

Self-management required hard work, commitment, and a knowledge of, not just of type 2 diabetes, but of the self, their own body and how to navigate through the healthcare system. Some felt confident and supported to do this, whilst others were left feeling bewildered, confused and wanting more information and support. For example, despite receiving a blood glucose monitoring machine from their GP practice, some participants had not been shown how to use it or knew what the numbers meant:

“I was given a blood monitoring machine. But the nurse was too busy to show me how to use it, so they told me to go to the chemist, that the pharmacy would teach me but the pharmacist had to Google it to get it on YouTube to see how to do it, so the.. Then she, a young girl just told me to go away and I still don’t know the numbers. So I don’t use it. Because I don’t know what number my blood is supposed to be.”

All the groups who were interviewed discussed not receiving, or not understanding, the results from their blood tests. Self-monitoring however was seen as important to many participants and a way they could maintain control of their condition:

“It's been really empowering because it puts me in control of my blood sugars and I get a reading every single morning and they're stabilising now…”

The inconsistency in services, particularly in primary care, for example GP practices, created obstacles when it came to people effectively managing their type 2 diabetes. There is a need for people with the condition, their families and relevant health services to work well together, to listen, value and support each other in order to better help the individual to effectively manage their condition. There was a need for more information and access to a structured education program about type 2 diabetes, especially when someone was first diagnosed, because for some this was missing;

“They called me in, says you're diabetic, that was it, finish, other than that, say the courses the, I've had none of those, none whatsoever.  I had to find out myself for the, what you could have and what you couldn't have.”

When there was no or little professional advice and information, some participants supported themselves, for example, by finding information online:

“See all the information I’ve got I got myself though, I haven’t been told by the NHS. I was left to struggle, to learn alone”.

Coordinating and organising medication was central to managing type 2 diabetes well, but other conditions that also required medication, such as high blood pressure and arthritis, made this more complicated. Taking lots of medication, the pain experienced whilst injecting insulin, side effects and fitting medication around daily life was sometimes challenging and at times awkward:

“Because I just don't want to hulk this bloody great bag about if I'm honest, I just don't want to cart it about, you know. Yeah, well it, it's just awkward isn't it?”

However, for others taking medication gave them a sense of control, and was something that made them feel they were helping themselves:

“It makes you feel better don't you?  You feel as though you're helping yourself.”

For many people, self-management was the most effective, and for some, the only way to successfully manage their condition. But by patients, health professionals and clinical systems working together in partnership with one another, this would further help to achieve both the person with type 2 diabetes’ and the health services’ desired outcomes.

There was a number of barriers to the management of type 2 diabetes. Participants spoke of conflicting and inconsistent advice, information (especially around food choices), guidance and care, especially in primary care, which led to frustration:

“It’s like God, all I want is a bit of advice.”

GP and other services, such as dieticians, physiotherapists and podiatrists, were hard to access and difficulties were encountered when those with type 2 diabetes tried to getting an appointment with a GP, for example, having to wait a long time, or managing the receptionist to get one. There were also inconsistencies in how often people with type 2 diabetes received check-ups, how long their appointment lasted, and where they received foot checks;

“Once a year, and it's supposed to be everything, you know, that she discusses everything supposedly with you, so that, she's too busy with one, she decides on one condition that you're in with, each, each time, it seems, she does the basics with the diabetes,… … and then she'll sort of rush you, because she's always so busy,..”

The general information about type 2 diabetes was often seen as negative, threatening, restrictive and mostly about what ‘can’t be eaten or done’. Public perception of those with type 2 diabetes was sometimes judgemental and stigmatising:

“but new people who meet you and they, and you discover that first of all [you have diabetes], they have that same kind of recoiling action.”

“And I think there is this kind of blame as well of sort of, you know, you've brought this on yourself, so what do you expect, you know?”

There were many participants who experienced very good services, which help to control and manage type 2 diabetes. These included weight loss programs, getting repeat prescriptions and appointments online, and working in close partnership, sharing results, and making decisions jointly with their GP and diabetes / practice nurse. The group interviews that took place in this research study highlighted how valuable it was for those with type 2 diabetes to talk to others who shared the same condition. They were able to offer and receive peer support by sharing information, particularly on food, giving advice and using their own experiences to help, support and reassure others.

Suggestions for Service Development and Improvement

Participants highlighted a number of areas services could develop or improve. These included the need for;

·       Clear support and guidance at the point of being diagnosed with type 2 diabetes, which could involve the individual’s family.

·       Consistent and up to date information on self-care, screening checks needed, food choices, healthy weight management, medication and the services that are available to someone with type 2 diabetes.

·       Easily available support and informed advice.

·       Better access to specialist services, such as podiatry and dietetic services.

·       More regular and frequent, more than once a year, checks and monitoring.

·       Automatic feedback on blood tests and a clear explanation of the results.

·       The use of technology, for example, making appointments online and the use of emails rather than letters.

·       Coordinated and joined up care; a one stop shop, especially for those who have more than one health condition.

·       A focus on people with type 2 diabetes who are aged between 30 to 40, as they tended to pay the least attention to their health.

An improvement in all of these areas could help to maintain people’s overall health now and in the future. Participants identified a number of other areas which could help them maintain or improve their overall health:

·       Group / social peer support, and the choice to have this support face to face and / or online.

·       Organised exercise groups, such as a walking group, which would have both a physical and social benefit.

·       Reduce priced gym memberships.

·       Services and support for emotional and social wellbeing, for example, a mindfulness course.

·       Supported self-learning and ‘understanding yourself’ to help manage type 2 diabetes.

Conclusion

Good self-management and taking responsibility helps to control type 2 diabetes, but this can be a potential burden on the individual with this condition. A lack of coordinated health and social care can further increase this burden. With better structured and coordinated services, along with the support of the individual’s family and their communities, those with type 2 diabetes can be supported to successfully manage this condition. Those we spoke to identified new areas which could better meet their needs and which took into account their own individual lives, including their work, and how this affected their own management of type 2 diabetes

Listening to those who do did not access services, it was clear that many had complications with their health and faced challenges in their lives, such as difficulties with their mobility, managing their weight and mental wellbeing. This meant they found it difficult to access services, which resulted in a negative effect on their own health and the healthcare they received, which then lead to additional complications. This cycle was both complicated and had many sides to it, highlighting the complex nature of living with type 2 diabetes.

Athena SWAN awards

Yvonne Gledhill and Lolita Alfred members of the SHSW Athena SWAN committee have attended the awards ceremony in London this week (Wednesday) on behalf of the School to receive our Bronze award.  The award recognises a committment to gender equality in academia.  The school led PoWER programme was cited as a good practice example.  

NICE issues new guidance on the treatment of eating disorders

The British Psychological Society has welcomed the publication of the new eating disorders guidance by NICE - the National Institute for Health and Care Excellence.

Addressing gender bias in teenage mums of lower socio-economic status.

Dr Carol Lambert

Project team: Dr Carol Lambert, Rhona Williams, Dr Judith Dyson and Florence Reedy (Doctoral candidate)

This is one part of a four-part project. The key aim of this part of the project is to increase access to Higher Education (HE) for teenage mothers by raising aspirations and reducing psychological barriers to continuing education. Working in collaboration with the Boulevard Centre that provides education specifically tailored for pregnant teenagers and teenage mothers, this project gives voice to this under-represented and marginalised group of female students who themselves can be subject to the negative attitudes held by societal members who interact with them. This project will enable collaborations with colleagues across the University including English, Drama, Social Work, Midwifery and Psychology.

Women with a BMI = 30 kg/m² and their experience of maternity care: a meta ethnographic synthesis

Catriona Jones

Catriona Jones and Julie Jomeen have published:

Jones C, Jomeen J (2017) Women with a BMI = 30 kg/m² and their experience of maternity care: a meta ethnographic synthesis Midwifery.  DOI: 10.1016/j.midw.2017.07.011

Julie Jomeen

Conference: European Understandings of Advance Decision-Making

12th September 2017

University of Leeds, Leeds, UK

This interdisciplinary conference marks the culmination of the ESRC research seminar series ‘Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach’

Registration

Registration for the conference is free, but compulsory. Numbers are limited and early registration is highly recommended. Please register via Eventbrite.

Bursaries will be available to fund travel and accommodation costs for PhD students – please email if you wish to apply for financial support. The conference is aimed at both academic and professional attendees.

Keynote speakers

Professor John Ellershaw (Professor of Palliative Medicine, University of Liverpool)

AND

Professor Rob Heywood (Professor of Medical Law, University of East Anglia):

“Shaping Our Future Destiny: Legal Observations on Advance Decision-Making - Past, Present and Future.”

Swedish gay and lesbian students’ experiences of their time in school

Professor Julie Jomeen has co-authored:

Hammarlund K, Sjunnesson S, Tettenborn N Jomeen J (2017) “I HAD A LUMP IN MY STOMACH EVERY MORNING AS I WENT TO SCHOOL” Swedish gay and lesbian students’ experiences of their time in school British Journal of School Nursing

Employee Excellence awards

Dean Professor Julie Jomeen writes:

I would like to offer huge congratulation to two members of staff who received Employee Excellence awards last night.

Jules Cornes for Customer Service and Prof Miriam Johnson for Research Excellence

These are well deserved awards and it is great for us as a new faculty for staff to have achieved such recognition  – well done to both

PhD Success in the School of Health and Social Work

Dr Moira Graham writes: 

Congratulations to three of our PhD Students who graduated on Monday at the Faculty of Health Sciences Conferment of Degrees Ceremony.  Congratulations also to their supervisors.

Dr Abdullah Almilaibary (Supervisors Professor Mark Hayter and Dr Jeremy Jolley)

Dr Norma Buttigieg (Supervisors Professor Fiona Cowdell and Professor Steve Ersser)

Dr Richard Gellejah (Supervisors Dr Julie Seymour and Professor Kate Galvin) 

Developing a Stoma Acceptance Questionnaire to improve motivation to adhere to enterostoma self-care

Professor Roger Watson has co-authored:

Bagnasco A, Watson R, Zanini M, Catania G, Aleo G, Sasso L (2017) Developing a Stoma Acceptance Questionnaire to improve motivation toadhere to enterostoma self-care Journal of Preventative Medicine and Hygiene 58, E190-E194

This article is open access

More soapbox science

• This year’s Soapbox Science Hull event was held the 1^st of July, in St Stephens. It featured 12 leading female scientists from the University of Hull, University of Leeds, and University of Bradford, ranging from PhD students to professors. They engaged over 700 passers-by in scientific discussion and debate. It was an exciting event, and our amazing speakers talked about such topics as microparticles, living fossils, cancer vaccines, and the origin of muscle names.
• 
  
• The organisers Dr Isabel Pires, Dr Helena Gomes, and Phil-Bell Young would like to thank all speakers and volunteers from the University, as the event would not have been possible without them. Dr Pires says: ‘It was a huge success and we had excellent and overwhelmingly positive feedback from our visitors, and we cannot wait to bring Soapbox Science back to Hull in 2018!’
• 
  
• If you are a female academic (PhD student to professor), and are interested in participating in 2018 as a speaker, please contact Dr. Pires. If you are keen to volunteer please contact Dr Pires as well. You can also follow our twitter account at @SoapboxHull, or visit our website at. A formal call will be announced later this year.
• 
  
• Soapbox Science was started in London in 2011 and aims to shine a spotlight on female scientists and challenge traditional science gender stereotypes, as well as take science out of institutions and directly to the public. The public was invited to learn, question and interact with the researchers during one-hour sessions, which showcased four speakers per session.