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

Evaluation Report_EDPSN_SCiA and Options Jan 24

Eating Disorder Peer Support Network

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

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

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

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 Galea^1,2
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

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 Silber^1,2
Prof Ian Galea^4,5
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