Evaluating a new peer support network for people with eating difficulties/disorders

 

Background

The Southampton Eating Difficulties Peer Support Network (EDPSN) launched in 2023 to provide peer support to adults who either have eating difficulties/disorders themselves or are supporting someone else with these difficulties.

The network provides group, one-to-one and online peer support.

My work

This evaluation was undertaken early following the network launch and is exploratory in nature. It aimed to understand how the network is currently operating and the impact is having in order to inform changes and improvements as it is further developed and scaled. It also explored the range of outcomes and impacts that the service may have for both the service users and the volunteers, the mechanisms by which positive outcomes and impact are achieved, and any relevant contextual factors.

Overall, the network exhibited promise in delivering effective peer support, with both users and volunteers reporting positive experiences.

The evaluation recommendations centred around continuing to offer and promote the network, developing and optimising it to address emerging issues, and embedding evaluation and monitoring into routine operations.

The evaluation findings will guide SCIA/Options in how to best proceed with developing a safe, engaging supportive peer network. SCIA/Options will also use the evaluation to support them with attracting further funding and developing further partnerships to sustain and grow the network.  

Funder

SCIA

Reports and links

Eating Disorder Peer Support Network

 

 

Evaluating peer-led services to support the wellbeing of people living with HIV

Background

Brigstowe is a Bristol charity providing support and services for people living with HIV.

Brigstowe delivers ‘Positive Voices’, a set of services for people living with HIV which are delivered by other people living with HIV. It aims to improve their emotional wellbeing, social inclusion and HIV self-management. It also aims to reduce stigma by improving professional expertise and attitudes. 

My work

This evaluation explored the impact of Positive Voices, gathered learning for project improvement, investigated challenges and successes, ascertained the value it provides, and explored how it should further develop. 

Methods included document review, analysis of service delivery and service user feedback data and interviews with a range of people involved in co-ordinating, delivering and participating in Positive Voices.

The evaluation found Positive Voices continues to be effective in achieving its aims. Findings demonstrates how it positively impacts the psychological, social and physical well-being of people living with HIV, sometimes in life-changing ways.  Eleven recommendations were made which relate to optimising Positive Voices delivery and/or extending the impressive impact already achieved.

Brigstowe are using the evaluation findings to support future funding bids, promote and raise awareness of the services, and develop an action plan to optimise and extend Positive Voices.

Funder

The evaluation was commissioned by Brigstowe, who were funded to deliver Positive Voices via the National Lottery Community Fund

Related Reports and Links

Positive Voices Evaluation- Summary version April 2024

Positive Voices Evaluation- Full version April 2024

https://www.brigstowe.org/help-support/1-1-advice-support/

 

 

Image by Diva Plavalaguna on Pexels :  close-up-of-people-bumping-fists-6146704

 

Co-creating an interactive self-help website for psychological wellbeing in people with Motor Neurone Disease (MND)

Background

Motor Neurone Disease (MND) is a neurodegenerative disease that has no cure.  It progresses rapidly and relentlessly causing loss of abilities such as walking, talking, swallowing and eventually breathing. Sadly, people often don’t live for more than a few years after diagnosis.

Not surprisingly, many people with MND and their family members experience emotional distress.  The symptoms, disability and the day-to-day burden of managing MND and patchy NHS provision of psychological services means that they often can’t access psychological interventions.

My Work

The Motor Neurone Disease Association (MNDA) funded me to supervise a three year research programme developing an online self-help website (CALM; Coping and Living with MND). CALM brings together a collection of techniques used in psychological therapies. We tailored everything to be suitable for the specific needs of people with MND (and their family caregivers).   We completed in-depth interviews with patients and caregivers, conducted an extensive literature review, then formulated ‘Guiding Principles’ that articulated how to ensure CALM was engaging and acceptable to this particular user group and context.

After building a prototype version of CALM we continued to work with people with MND and their family caregivers to improve and refine it. We used ‘think-aloud’ interviews, written feedback and interviews with people who had tried it at home for a few weeks.  We established that people with MND find CALM acceptable, engaging and helpful. We then ran webinars with health professionals to gauge their interest in signposting their patients to CALM available and planned out pathways to roll it out.

It's very helpful knowing that this stuff is all there, for when you get in such a state that you can't think for yourself really. (‘Elaine’, Family Caregiver)

I found it helped me through a tough time I was having recently when I was introduced to RIG tube feeding and experienced adverse side effects. (‘Jane’, Person with MND)

Funder

The Motor Neurone Disease Association (MNDA)
Public Engagement with Research Unit, University of Southampton

Key Collaborators

Dr Cathryn Pinto1
Dr Adam Geraghty1
Prof Lucy Yardley1,2
Prof Francesco Pagnini3

  1. University of Southampton
  2. University of Bristol
  3. Universita Cattolica del Sacro Cuore, Italy.

Related reports

Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

Experiences of psychological interventions in neurodegenerative diseases: a systematic review and thematic synthesis

Involving stakeholders in creating a website to help new parents think and feel better about feeding babies

Background

Whether they breastfeed, express milk, use formula or a combination of these, many women experience shame, guilt and embarrassment about how they feed their babies.  They can feel unsupported, criticised, and like they need justify these decisions to others. This can negatively impact their wellbeing.

My Work

I collaborated with a multi-disciplinary team to develop an interactive website for parents and family members, friends, health professionals and others who provide support with feeding infants.  The website presents thought-provoking and accessible messages and activities that help people think differently and feel better about feeding babies.

I developed a strategy for involving end-users in creating and improving the website. This involved a series of stakeholder events and an iterative process of user feedback to ensure the website was as engaging and useful as possible to a wide range of users.

The Feeling Good About How We Feed Our Babies website launched at a meeting of the All Party Parliamentary Group on Infant Feeding and Inequality in Westminster in 2019.

As of December 2022, it has had over 104,000 visits and fantastic feedback and reviews.

This work was appraised as having ‘outstanding reach and significance’ in the University sector’s Research Excellence Framework 2021 Impact exercise.

Funder

ESRC

With support from NCT and Breastfeeding Network

Key Collaborators

Professor Fiona Woollard1
Dr Heather Trickey2
Dr Marta Glowascka1
Phyll Buchanan3

1.University of Southampton
2.Cardiff University
3.Breastfeeding Network

Image credits: Fiona Woollard (Super-cute illustrator as well as Prof!)

 

Related reports

Feeling good about how we feed our babies

REF Impact Case study. Infant Feeding: Guilt and Shame

Exploring user perspectives on smartphone apps for health behaviour change

Background

Smartphone apps are now a common way of delivering interactive advice and support to improve physical and mental health outcomes.

My work

In one of the first studies on what was then an emerging field of digital health, I directed a study involving focus groups with students and young adults about smartphone apps for health.  Guided by a set of open-ended questions, participants discussed their experiences of and perspectives on smartphone apps to support healthy lifestyles.

I conducted a thematic analysis of this data. It highlighted key issues including; credibility and accuracy, perceived disposability of apps, feeling harassed by prompts and notifications, and scepticism about how successfully apps might use data (e.g. sensed location, weather conditions, predicted mood) to deliver useful real-time behaviour change support.

I developed and published

1.     a checklist for valuable features in health apps

and

2.     a set of challenges that app developers and behavioural scientists needed to address to ensure progress in making these sorts of apps acceptable and effective

This was one of the first published studies exploring user experiences of apps for behaviour change. The work has been influential and has been cited in other research reports more than 1000 times.

Funder

EPSRC

Key Collaborators

Prof Lucy Yardley1
Dr Leanne Morrison1
Gemma Conway1

University of Southampton

Related reports

Opportunities and Challenges for Smartphone Applications in Supporting Health Behavior Change: Qualitative Study
https://www.jmir.org/2013/4/e86

Enhancing services for falling in Parkinson’s disease through qualitative research with couples

Background

Falls are common in Parkinson’s disease, have a negative impact on health and independence and a high cost to the NHS. They are therefore a recognised research priority.  Informal caregivers, particularly spouses, are often involved in trying to prevent and manage falls but their perspectives have been neglected in research.

My Work

I directed a project focussing on understanding patient and caregiver experiences and perspectives to improve how falls are managed and/or prevented.

We reached out to local support groups for people with Parkinson’s disease and invited people to participate in an interview about their experiences of falling and managing falls.  20 people with Parkinson’s disease and 18 of their caregivers (husbands, wives) took part. We used a qualitative analysis approach and developed themes from the data.

We discovered

  • People try but struggle to understand why they fall
  • Falling has negative physical, psychological and social consequences
  • People cope and adapt in a range of ways. But adapting usually means a more limited life for patients and caregivers.
  • Difficulties are exacerbated when the person with Parkinson’s disease also has dementia.
  • The health system is perceived as confusing and inadequate
  • Patients and families don’t understand who to contact or get timely information and support.
  • Spouses are burdened with the intensive work they do to manage falls on top of coping with other aspects of Parkinson’s Disease

Our report contains valuable insights for those designing, improving, and delivering interventions and services for people with Parkinson’s Disease.   Paying attention to patient and family perspectives and needs will help to ensure they are acceptable, engaging and ultimately effective.

Specifically, this work highlighted the need to develop:

  • Self-management interventions aimed at couples/families to help people competently self-manage Parkinson’s Disease in order prevent and manage falling.
  • Easier to navigate services
  • Better communication between families and health professionals

Funder

CLAHRC Wessex

Key Collaborators

Dr Charlotte Owen1
Christine Gaulton1
Prof Helen Roberts1

  1. University of Southampton

Related reports

Perceptions of people with Parkinson’s and their caregivers of falling and falls-related healthcare services- a qualitative study

Investigating prognosis communication needs in people with Multiple Sclerosis (MS)

Background

Multiple Sclerosis (MS) is an incurable and potentially progressive disease that produces a range of symptoms and impairments.

Health Professionals have traditionally been unable (and/or unwilling) to give patients specific predictions about how their own ‘version’ of the disease will pan out over time (i.e. their prognosis). However, huge datasets are now available about what has happened to many thousands of patients over long periods of time. Online tools will soon make it possible for patients themselves, or their healthcare professionals to generate, based on other similar people, predictions of short and long-term outcomes for a particular individual.

Is this a good thing? Do people with MS want to know? How might this information affect them?

My Work

I planned and directed two studies exploring how people with MS think and feel about communication about prognosis. One study involved in-depth interviews with 15 patients with MS. The other was a large questionnaire study of 3175 people with MS.

Together, these studies showed that people with MS tend to be dissatisfied with communication. Many express an interest in more information about their personal prognosis but have never spoken about this topic with their doctors. However, the interviews revealed the complexity of this issue. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of limited usefulness. Thinking about longer term prognosis doesn’t fit well with their attempts to remain positive and focussed on the present. After a few years of living with MS, people have usually formed their own beliefs about how their MS will behave, based on their own experiences so far.

These insights are useful for anyone communicating with people with MS or developing prognosis forecasting tools. A cautious and sensitive approach is needed, with due consideration of the likely usefulness and the emotional and practical impact.

Funding

None

Key Collaborators

Prof Ian Galea1,2
Ellen McCloy Smith1
Martina Brown 1,2
Dr Sarah Kirby1
Dr Katherine Bradbury1

  1. University of Southampton
  2. University Hospital Southampton NHS Foundation Trust

Related reports

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study

How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study

Establishing how to persuade and support people to prevent colds, flu and Covid-19

Background

For most people, illnesses like colds, flu and Covid-19 are unpleasant and disruptive. For vulnerable patients they can exacerbate existing health problems, hospitalise or even kill.  Some emerging evidence suggests that a type of nasal spray can help prevent these illnesses. But how can we persuade people to use these sprays?

My Work

I was a Health Psychologist and behaviour change expert on a large clinical trial.  I was responsible for establishing a) how people think and feel about these sorts of illnesses b) how they respond to the suggestion of using a preventative nasal spray and c) how to best persuade and support people to use a spray. I then wrote and refined the content for a website and a booklet to be issued, along with a nasal spray, to patients who are vulnerable to these illnesses.

I gathered valuable and rapid insights through using online customer reviews of this type of nasal spray.  I supplemented this with ‘think-aloud’ interviews with people who looked at the prototype website content then conducted semi-structured interviews with people who had used the website and booklet and tried the spray for a few weeks.  The findings from these studies allowed me to tailor of the written advice and include behaviour change techniques that would address the most prominent barriers to using nasal sprays and maximise uptake and adherence.

The nasal sprays (along with the website and booklet I developed) are currently being tested in a huge randomised controlled trial (RCT). This trial will establish how effective the nasal sprays are, when provided along with web and booklet-based behaviour change support.  As of December 2022 there were around 10,000 people in the study!

Funder

National Institute of Health Research (NIHR)

Key Collaborators

Dr Sian Williamson1
Dr Kate Greenwell1
Molly Handcock1
Dr Katherine Bradbury1
Dr Jane Vennik1
Prof Lucy Yardley1,2
Dr James Dennison-Day1
Dr Fiona Mowbray1
Samantha Richards-Hall3
Deb Smith3
Dr Ben Ainsworth1,
Prof Paul Little1
Dr Adam Geraghty1

  1. University of Southampton
  2. University of Bristol
  3. Patient and Public Involvement Contributor

Related reports

Using nasal sprays to prevent respiratory tract infections: a qualitative study of online consumer reviews and primary care patient interviews

Patient perceptions of vulnerability to recurrent respiratory tract infections and prevention strategies: a qualitative study

The Immune Defence Study

Evaluating a psychological intervention for people with Multiple Sclerosis (MS)

Background

Multiple Sclerosis (MS) is an incurable, chronic, unpredictable and potentially progressive disease. Symptoms often start in early or mid-adulthood.  Adjusting to living with MS is challenging and lots of people with MS develop depression and anxiety.

My Work

I worked as part of a MS Society funded research team on a 4 year programme of work. We developed and evaluated a nurse-led psychological intervention, delivered by telephone.

My role included

  • Leading a study where 30 people with MS were interviewed about how they adjust and cope. I collaborated on a parallel study on partner/spouses experiences. The findings were then used to tailor the intervention to the unique needs and experiences of people with MS.
  • Working with clinical and health psychologists to devise an 8-session programme of Cognitive Behaviour Therapy, including the development of patient and therapist manuals.
  • Setting up then co-ordinating a randomised controlled trial to evaluate the intervention.
  • Supplementing the main trial findings by conducting statistical analyses exploring how CBT works and under what circumstances it works best.
  • Interviewing 30 people who had taken part in the trial to explore their perspectives on changes occurring during therapy, and any factors that facilitated and hindered their engagement in therapy. I analysed the data and pulled out common themes.

We developed a novel intervention, tailored for people in the early stages of MS and showed that it was possible to train up nurses to deliver this therapy by telephone. The trial showed that the intervention reduced distress, particularly in people who began with low social support and higher levels of distress. The interviews provided insights into a wide variety of benefits and changes that people who participated noticed and shed light on how it worked and how it could be improved to make it more acceptable and effective.

The research (the ‘saMS trial’) won the MS Society ‘Research of the Year’ award (2013) and the therapy manuals are now available via the MS Society.

Funder

UK MS Society

Key Collaborators

Prof Rona Moss-Morris1
Prof Trudie Chalder1
Prof Lucy Yardley5
Dr Sarah Kirby5
Prof Eli Silber1,2
Prof Ian Galea4,5
Dr Angeliki Bogosian3

  1. King’s College London
  2. King’s College Hospital NHS Foundation Trust
  3. City University
  4. University Hospital Southampton NHS Foundation Trust
  5. University of Southampton

Related reports

Change and processes of change within interventions to promote adjustment to multiple sclerosis: Learning from patient experiences

A randomized controlled trial of cognitive behavioral therapy (CBT) for adjusting to multiple sclerosis (the saMS trial): Does CBT work and for whom does it work?

Protocol for the saMS trial (supportive adjustment for multiple sclerosis): a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis

Experiences of adjusting to early stage Multiple Sclerosis

Experiences of partners of people in the early stages of multiple sclerosis

Evaluating a public health rollout of a digital weight management programme

Background

Digital interventions can be a cost-effective way of supporting people to lose weight and improve their health.   My colleagues at the University of Southampton created an intervention called POWeR (Positive Online Weight Reduction). POWeR provides psychology-informed tools to help people make and sustain changes to their diet and physical activity. POWeR proved effective in a Randomised Controlled Trial and a public health team were keen for it to be made available within their local area.

My work

I planned a roll out of POWeR across the North East of the UK.  To see if it would enhance outcomes, I designed a brief supportive coaching programme to be combined with POWeR, then trained people to deliver the coaching by telephone.

Together with public health collaborators I developed letters for targeted mailouts, advertisements in the local press, and posts for websites and social media.  We rapidly enrolled 786 people into a community trial.   We found that coaching was a useful addition to the online intervention, keeping people using the intervention for longer and meaning they tended to report a little more weight loss.   I conducted in-depth interviews with a selection of participants which then allowed me to tease apart how, when and for whom, coaching was most useful and why uptake was lower than anticipated.

Working with the same Public Health team we later rolled out POWeR in a range of public and private sector organisations part of a workplace healthy employers scheme. More recently, POWeR has been modified for use in various disease self-management programmes (e.g. diabetes, hypertension, asthma) and is now being rolled out within the NHS by a commercial partner.

POWeR was appraised as having ‘outstanding reach and significance’ in the University sector’s Research Excellence Framework 2021 Impact exercise.

Funding

EPSRC

Key Collaborators

Scott Lloyd1
Dr Leanne Morrison3
Dawn Phillips2
Dr Beth Stuart3
Prof Paul Roderick3
Dr Katherine Bradbury 3
Dr Sarah Williams
Prof Lucy Yardley3
Prof Susan Michie5
Prof Elizabeth Murray5
Prof Paul Little3

  1. Redcar and Cleveland Borough Council
  2. Durham County Council
  3. University of Southampton
  4. Bournemouth University
  5. University College London

Related reports

Does Brief Telephone Support Improve Engagement with a Web-Based Weight Management Intervention? Randomized Controlled Trial

Using mixed methods to develop and evaluate an online weight management intervention

Understanding usage of a hybrid website and smartphone app for weight management: A mixed methods study

POWeR REF Impact Case Study