How volunteering at 'biscuit club' helped me build bridges between parents and researchers

Posted by Ella Anderson, Fuse Public Involvement and Engagement Manager, Newcastle University

 

“volunteering feels like the morally right thing to do – we can’t just ‘take’ from groups and not offer something in return”

 

MumSpace volunteers together

Supported by the Newcastle University’s staff volunteering scheme and Fuse colleagues, I had the opportunity to volunteer with MumSpace. As Fuse’s Public Engagement and Involvement Manager, this meant that I could spend some time away from my desk learning more about the voluntary sector within a grass roots organisation, build sustainable community relationships, collaborate with volunteers who have valuable connections to local communities and, above all, help out in a way that was specific and useful to the needs of the community group.

What is MumSpace?

MumSpace is a warm, welcoming and inclusive community group for parents, carers and their little ones. Here, the focus is on building supportive networks and providing children with a safe space to play. MumSpace is part of Parents and Communities Together (PACT), set up by Citizens UK. PACT was first set up in London as a community-led social support project and has since been successfully piloted in North Tyneside too. The project aims to empower parents and improve the health and development of young children.

The community group meets twice a week in North Tyneside during term-time. There is no cost to attend, although it’s possible to leave a small optional donation that goes towards drinks and snacks.

Toy time at MumSpace

Why did I choose to volunteer with MumSpace?

There are both personal and professional reasons why MumSpace was an obvious choice as a place for me to volunteer. On a personal level, I was lucky enough to attend MumSpace myself with my two children, in particular with my little boy. I always found this to be a welcoming space, no matter how I was feeling or what kind of day I was having. It was a place where you could chat with other parents and carers or just have a quiet cuppa whilst your little one whizzed about and played. I have made some brilliant friends at this group and I witnessed first-hand the value groups like this have on people’s wellbeing. It felt like the natural thing to do to give something back.

When I joined Fuse in 2021, I was already a regular at MumSpace with my son. Every week, there would be new faces and new people to speak with. It was evident that everyone’s experiences and backgrounds were unique - the one constant was that we were all caring for a little person. Each parent or carer has their own story, and it shows beautifully how one person alone cannot represent all thoughts, feelings and experiences of an entire parenting community. It was this diversity of experience that I could see would be a valuable addition to the Fuse Public Partner Network, as we seek to celebrate and share a wide range of voices and experiences in public health research.

In some ways, it felt like a natural next step to see if the group organiser, Wendy McConnell, might like to talk about involvement in public health research. Nevertheless, I admit that I felt a little nervous speaking with Wendy about a possible collaboration with Fuse, not least because I didn’t want to change the general feel of this space that felt miles away from my ‘work life’. But I needn’t have worried. Wendy and I chatted easily about our respective roles, about Fuse more generally, and about how there might be opportunities for working together. It felt a bit strange to be talking about work whilst at the same time chasing after my 4 year-old and trying to encourage him to play with the toys rather than steadily work his way through all of the biscuits on offer. After all, this was the group he fondly called “biscuit club”...

Looking back, I suspect that it was this informal and gentle approach - building on an existing foundation of trust and knowing one another - that in turn has made the relationship between Fuse and PACT more meaningful and fruitful.

MumSpace disco

How has MumSpace been involved with Fuse?

Wendy, PACT and the MumSpace parents and carers have played a significant role across a number of public health research projects. Wendy, for example, originally joined as a Fuse Public Partner in a personal capacity. But her role as a Parent and Community Organiser also lends itself well to building bridges between members of community groups and researchers. For example, parents and carers from MumSpace are collaborating on a project around poverty-proofing maternity services, have contributed to research around barriers to returning to work and childcare costs, and a researcher will be visiting the group in May 2024 to discuss a new project relating to food insecurity during pregnancy. Wendy has also spoken at a Fuse Public Involvement and Engagement Group meeting to share what it was like to belong to a community group involved in health research and to reflect on the associated benefits.

Mam’s time

What have the benefits of involvement in research been for the group?

Wendy explained that benefits of involvement have included the feeling of empowerment for parents and carers, feeling ‘heard’ and making positive changes, for example to services. There have also been benefits from collaboration with researchers, for instance, the development of a formal evaluation of MumSpace. This evaluation played a key role in securing new funding* to continue running the group. This demonstrates that research relationships can be positive for all involved. It also shows how reward and recognition for involvement can extend beyond remuneration – there can be other ways for university-based researchers to usefully and meaningfully ‘give back’. Volunteering can fall into this category too.

Arts and crafts

Has volunteering been useful for building relationships within community groups?

There have been notable benefits to Fuse and wider health research as a result of the volunteering and community engagement activities with MumSpace. It has helped to build trust; shows a commitment to truly listening to people and their stories; acts as a gentle stepping-stone towards the inclusion of diverse voices and perspectives within the Fuse Public Partner Network; and offers a greater sense of transparency about what involvement in health research is and what it can look like. It aligns with many of the core principles of the NIHR Community Engagement Toolkit. Newcastle University have also added PACT as an organisation who university staff and students can volunteer with in the future, so even after I have left there will be opportunities for continuity. In short, volunteering feels like the morally right thing to do – we can’t just ‘take’ from groups and not offer something in return.

What has it been like to volunteer?

Volunteering has been an incredibly positive and rewarding experience. To be on the ‘other side’ of the group and helping to set up, offering people what would often be their first teas and coffees of the day, and welcoming new people to the group and then seeing them return the following week has been brilliant. I can still only remember a maximum of two drink orders at a time (!!) but I hope people have felt as welcome and included as I did when I first joined.

Want to find out more? Get in touch!

For more information, please email Ella Anderson, Fuse Public Involvement and Engagement Manager on eleanor.anderson@ncl.ac.uk.

For more information about MumSpace, PACT and Citizens UK in particular, email Parent and Community Organiser Wendy McConnell: wendy.mcconnell@citizensuk.org

New faces are always welcome at the group:

Tuesdays – 12.30pm to 2pm at St. Luke’s Church, 10 Frank Street, Wallsend NE28 6RN
Thursdays – 9.15am to 11.15am at St. Cuthbert’s Church, Albion Road West, North Shields NE29 0JB


*From March 2020 to August 2023, MumSpace was funded by Comic Relief and, following a successful funding bid, it is now funded by Public Health North Tyneside.

Patient and Public involvement with Parents during a Pandemic: the four ‘P’ challenge

Posted by Hannah Batten, Food and Human Nutrition undergraduate student, Newcastle University.  Hannah is on a placement year with the Population Health Sciences Institute, as part of the MapMe intervention team.

If you have a primary school age child, then you’ve probably heard of the National Child Measurement Programme (NCMP). For 13 years, it has collected data on the height and weight of children aged 4-5 and 10-11 years old in England. This information is used to calculate what is called the ‘weight status’ of a child and the results reported to parents via letter. Unfortunately, these letters often receive a mixed response, with many parents mistrusting the results.

Research has also shown that parents often struggle to recognise if their child is overweight, preventing them from taking action to address this.

Body image scales on the MapMe website are currently being updated for MapMe2

This issue sparked the development of the MapMe intervention, led by Fuse Director Prof Ashley Adamson and Angela Jones, which aims to help parents assess child overweight / obesity. The MapMe tool includes:

• sex and age specific body images of children ranging from underweight to very overweight
• information on the consequences of being overweight in childhood
• advice on healthy eating, physical activity and links to further support.

Funded for large scale testing by the National Institute for Health Research, the MapMe tool will be delivered as part of the National Child Measurement Programme across nine areas, aiming to improve how parents respond to the letters and the NCMP process, supporting parents to take action.

The project originally had a 3-year time frame, with the intervention scheduled to be delivered in 2020/21. But, as with many other things, COVID-19 got in the way and with schools closed this prevented the delivery of the NCMP, which delayed the project by a year. Although this was disappointing, it has allowed extra time for us to focus on preparing for the next part of the study focusing on Patient and Public Involvement (PPI).

Doing PPI during a pandemic

PPI involves gaining insight during the research process from members of the public, improving research by providing additional expertise from a non-researcher perspective. One key task for the MapMe2 study was to figure out how we could recruit and run an online Parent Involvement Panel (PIP) to help review documents and study materials, when parents are already dealing with a global pandemic.

Recruitment and communication

To accommodate people being stuck at home during COVID-19, parents were recruited through social media and network sites such as the Newcastle University staff pages. Once the Panel was created, we asked parents how they wanted us to communicate with them and kept in frequent contact via email and newsletter to keep them informed and engaged in the project. As this was unknown territory for everyone, good communication with the Parent Involvement Panel was essential.

Moving online

Pre COVID-19, we had planned to hold face-to-face meetings with the parents in easily accessible venues such as the Great North Museum in Newcastle upon Tyne. However, as has become the norm with lockdown and social distancing measures, in person gatherings have been replaced with Zoom meetings. On the plus side, this allowed the meetings to go ahead and parents to attend from any location, but did result in frequent technical issues! When preparing for remote meetings, we sent out documents to parents in advance and scheduled breaks to avoid ‘Zoom fatigue’. We also used ice breakers at the beginning of sessions to make parents feel at ease.

Making information accessible to all

COVID-19 has intensified the digital divide in the UK, with a large number of people having limited access to, or understanding of, devices. Reading information and training documents on the small screen of a smartphone or tablet is not a practical or enjoyable experience. In an attempt to address this, we send hard copies of the Parent Involvement Panel manual through the post.

We have also created videos that will be posted on YouTube (example below), making them easily accessible to parents whenever they wish. The videos include members of the study team welcoming and informing parents about the project and their role, as well as short animations providing training tips. Although these are perhaps not Oscar-winning performances, they provide the information in an alternative and accessible format for volunteers.

 

Learning from our experience in carrying out remote Patient and Public Involvement during COVID-19, information needs to be provided in an accessible way like videos, and volunteers need to be aware and comfortable with the options available to feedback their opinions.

Saying thank you

Finally, and most importantly, is to say to our participants that we are extremely grateful for their time and input, particularly during these uncertain times.

As long as we are mindful of these new challenges, online Patient and Public involvement can still be a valuable and effective way to work.

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

This crisis has shown how many people were only just about managing

Mandy Cheetham, Research Associate from Teesside University, on the community response to the coronavirus crisis

I have been working as an embedded researcher at Larkspur House, a community project run by the charity Edberts House, funded by Big Lottery, to build happier, healthier and safer communities since October 2019. I started there, not long after it opened, to explore what difference the project is making, and fieldwork was well underway when COVID-19 struck. The project reluctantly had to take the decision to close and the groups and activities temporarily stopped. Like many others, I started working from home, feeling helplessly disconnected from people that I’d got to know, and wondering how everything was going.

A phone call from a colleague at 6pm on 30 March changed all that with an invitation to get involved in the multi-agency response to the COVID-19 crisis. Larkspur House was to morph into one of nine community hubs co-ordinated by Gateshead Council distributing food parcels, delivering prescriptions and offering support to people who are medically and socially vulnerable. I jumped at the chance, and since then, it has been something of a rollercoaster. We are a small, multi-disciplinary team, with complementary skills, talents and experience in an extremely busy hub. We phone people who have contacted the council for help to see what they need. In 4 weeks, we have delivered 250 food parcels to approximately 1000 people in the local community and three neighbouring estates. It’s important, exhausting, rewarding and at times frustrating work. It has revealed enormous generosity, neighbourliness, resilience, kindness and anxiety in the communities we serve. The crisis has also shown how many people were only just about managing day to day.

Since the lockdown started, I have listened to people who are fearful for their lives, worried about how they, their families and friends are going to manage through this crisis; the precariousness and embarrassment of people having to admit they are down to the last packet of pasta; people having to borrow from neighbours, family and friends; at the end of their resilience facing additional hurdles; people relying on Universal Credit, who’ve been sanctioned pre-lockdown and whose money has been stopped for 4 weeks during lockdown; the family with 4 children under 7 whose utility company cut off their gas supply leaving them without hot water or heating; the response of an unflappable team member who calmly and unquestioningly dropped off a food parcel and topped up the gas meter at 9pm on a Friday night to help a family through the weekend.

People who are routinely going out of their way to help people through this; pharmacists working flat out to process and deliver prescriptions, family members in touch with concerns about parents, grandparents and great-grandparents who they cannot help for fear of putting them at risk. The kindness and dependability of the volunteers from the estate who deliver daily packed lunches to children on free school meals, including on Good Friday and Easter Monday. The same volunteers who methodically planned, packed and delivered more than 300 craft packs to go out with donations of Easter eggs in the local area. The drivers and volunteers delivering the food; the unquestioning generosity of supermarket managers in local shops who I have approached for donations of bread, eggs, toiletries, nappies, baby wipes and fresh vegetables to include in the emergency boxes we distribute. The teachers, assistants and school staff looking after key workers’ children and children of families who need extra help. The humour of the Larkspur craft and natter group, formed by staff in response to being unable to meet weekly, so people can offer encouragement and support remotely, sharing tips, knitting hearts and NHS bears for patients and their families. People’s willingness to help where they can in creative and diverse ways; the unrelenting drive and ambition to help people through this awful, unprecedented crisis.

In such a short space of time, it has revealed so much of what can be achieved when we pull together, build on the trusting relationships and networks we have developed, sometimes over years, with respect, kindness, compassion, thoughtful leadership and careful co-ordination, non-judgemental and flexible approaches. It is, and continues to be a privilege to be part of this team. It couldn’t have happened in the way it has without the community members, staff and volunteers from Larkspur House whose nimble, agile response has made a tangible difference to local people. Relationships have been strengthened and cemented; bonds that will last.

Some people are saying the world has changed forever. I hope it is for the better. I hope the academic and research community has been able to show what a difference we can make when we work together, in collaboration with local communities, responsive voluntary organisations working alongside staff from local government, NHS, and education. Universities can claim to be part of a wider civic response, and at times like this, we can contribute in multiple ways. Whether our area of research is on vaccines, testing, contact tracing, epidemiology, modelling, food poverty, Universal Credit, welfare reform, nutrition or any other area of public health, there are multiple ways to be useful in the short, medium and long term. It involves working with others, as part of teams generating solutions together. We need to accept we do not have all the answers, we are part of a jigsaw of possible responses. That might mean moving out of our comfort zone, rolling up our sleeves and packing food parcels with colleagues and communities who will remember you were there with them when it mattered.

There are wider issues of course, longer term policy issues to focus our attention on, including policy issues to do with Universal Credit, welfare reform and its impact, which pushed people to the edge of coping before COVID-19 started. But for now, there are more pressing issues of food and prescriptions to deal with. Your local area will have its own responses and networks in place, formal and informal. If you’re shopping for others, that’s great. Can you safely check on neighbours around you? When you’re in the supermarket, foodbanks need your donations more than ever. Find out what they need. For the hubs, tinned meat, tinned fish, coffee, UHT milk, cereal, washing up liquid, shower gel and shampoo are useful. If you are in a position to donate, please do. Find out where your local voluntary organisations are helping and how you can support them. If you want to find out more about the charities involved in the Gateshead hubs, visit https://www.ageuk.org.uk/gateshead/help-pages/coronavirus/ or http://edbertshouse.org

Research journey for hospice evaluating its innovative dementia care

Posted by Nicola Kendall, Namaste Lead, St Cuthbert’s Hospice and Dr Sonia Dalkin, Senior Lecturer in Public Health and Wellbeing and Lead of the Fuse Healthy Ageing Research Programme

To celebrate World Hospice and Palliative Care Day, we wanted to share part of St. Cuthbert’s Hospice’s research journey, in collaboration with Northumbria University. Specifically, we wanted to share some of the innovative activity that has been taking place in practice surrounding ‘Namaste Care’ and the evaluation of it with Fuse funding.

What is Namaste Care?

As dementia progresses, family carers describe a changing relationship and sense of loss, which can cause significant distress. Finding new ways of communicating is important to help the family carer and person with dementia to maintain a good quality of life. ‘The End-Of-Life Namaste Care Program for People with Dementia’ (Namaste Care) challenges the perception that people with advanced dementia are a ‘shell’, a ‘living death’; it provides a holistic approach based on the five senses. Early evidence suggest that it can improve communication and the relationships families and friends have with the person with dementia.

How has St. Cuthbert’s Hospice used it?

St Cuthbert’s Hospice in Durham has started to provide Namaste Care in the person’s own home, as opposed to its more traditional use in care homes. We train volunteers who are then matched with a person with dementia, in terms of personality, abilities and interests, for example. Volunteers visit the person, usually weekly for two hours and try to build a bond with the person living with dementia and the family.

Why did we want an evaluation?

Evaluating Namaste Care has proved challenging for many organisations. It is straightforward to measure reduced number of falls, less infections and reduced agitation, but teasing out the nuances of why the approach works requires more detailed study. Also, we were aware that our use of Namaste was somewhat novel, with only one other hospice in the UK implementing Namaste Care in people’s own homes. A team at Northumbria University, led by Dr Sonia Dalkin applied to the Fuse Pump Prime fund and was successful in attaining a small pot of funding to do some preliminary evaluation of our use of Namaste Care.

What did the evaluation find?

The preliminary research found that when used in people’s own homes Namaste Care has positive outcomes, such as increasing engagement and social interaction. Previously, social interaction had potentially been overlooked in the literature as an important outcome of Namaste Care. This was particularly important for carers who felt that their loved ones with dementia often didn’t have any interaction with others, beyond those living with them. The importance of matched volunteers was also highlighted, and special relationships were built between volunteers and the person with dementia. Family members would often use the time when the volunteer was present as respite as opposed to taking part in the session, and this highlighted interesting perspectives on their involvement in Namaste. The evidence suggested that those who care for a person with dementia at home provide continuous care and have little input from other services, therefore provision of two hours contact with a trained Namaste Care volunteer allowed them to concentrate on other things, knowing that the their loved one was in safe hands. This is in contrast to the usual delivery of Namaste Care in care homes, where family members may feel more able to get involved as they do not provide continuous care.

What next? 

Book for organisations and carers
interested in using the approach

• Delivery of Namaste Care in various settings
The ethos of the Namaste Care approach has proved transferable into various care settings at St Cuthbert’s hospice. We now run a Namaste inspired ‘Potting Shed’ Men’s Group and we deliver Namaste Care at the bedside in an acute hospital. We are also in the early stages of discussions about taking Namaste Care into prisons, either via staff training or training prisoner buddies. We are very proud to say that due to this and other work we have been shortlisted as finalists for ‘Best Team Award’ in the 10th National Dementia Care Awards 2019.

• Spreading the word
The Hospice has developed a training programme which is steadily gaining popularity. Nicola Kendall (Namaste Lead) has also written a book as a guide for other organisations and carers who are interested in using the approach: ‘Namaste Care for people living with advanced dementia - A practical guide for carers and professionals’. The book is now available from Jessica Kingsley Publishing.

• Research
Nicola has just attended the Namaste Care International Conference and continues to take Namaste Care from strength to strength at St Cuthbert’s Hospice. We are now planning to further evaluate our work, building on the findings of the preliminary evaluation and the guide book… Watch this space!