Patient and Public involvement with Parents during a Pandemic

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. This sparked the development of the MapMe intervention, led by Fuse Director Prof Ashley Adamson and Angela Jones, which aims to improve parent acknowledgement and understanding of 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.

The body image scales on the MapMe website. The website and body image scales are currently being updated for MapMe2.

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.

Coping with the impact of COVID-19

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).

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 MapMe 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 were replaced with Zoom meetings. On the plus side, this allowed the meetings to go ahead and parents to attend from any location, but did sometimes result in some 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 sent hard copies of the Parent Involvement Panel manual through the post.

We have also created videos which were posted on YouTube, 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, effective way to work.

If you’d like to join our parent panel, you can get in touch at Mapme2@newcastle.ac.uk

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