Patient Experience Research Centre

In conversation with: Kimberley Foley, Research Associate and a community member who attended the Ealing Parent Carer Forum (who will be referred to as ‘Gonzalez’)

Kim is a researcher working in child health. In this blog, she shares her recent experience speaking with members of the community about her research ideas and future plans. Gonzalez, one of the community members who attended this event, has co-authored this blog with Kim.

Picture 1: Researchers, including Kimberley (front table, on the left), alongside fellow researchers and community members at the Ealing Community Involvement in Research event.

Kim: What is your research project about and what stage are you at?

The most common reason why young children visit their doctor (GP) is because of a respiratory infection. In my research I am studying children’s visits to their GPs and I have been examining how both respiratory infections and GP visits have changed since the COVID-19 pandemic. I have described the immediate impact of the pandemic lockdowns on children’s GP visits (read the full article here: https://doi.org/10.3399/BJGP.2021.0643) and recently described the impact of the pandemic on patterns of respiratory infections in young children (read the full article here: https://doi.org/10.3399/BJGP.2024.0501).  I am still in the process of prioritising and refining what to study in this broader research programme and I am seeking funding for this work.

Kim: What did you want patients/the public to help you with?

I previously applied for further funding for this project and I wanted to get input from the public to strengthen my next application, in response to the feedback I received. I wanted to get public involvement to confirm the importance of my research question and explore the appropriateness of my research plans to answer that question. My original funding application had plans for involving the public in my work, but I wanted to find out if there were any gaps and ensure the funding I was requesting covered all expenses appropriately. I was very interested in getting feedback from the public to make sure my research addresses the most important issues to children and families. Incorporating ideas from parents/carers within the communities I am studying will help make sure my ongoing research is relevant and useful to the community.

I previously participated in a similar event hosted by the Patient Experience Research Centre at Imperial and found the conversations with the community visitors at my table to be very insightful and helped me refine my research plans. Therefore, I knew this event would be similarly engaging and helpful! (For more details on the previous  event, see my other blog: Bringing together experts in public involvement, researchers, public partners, and the public to improve early-stage research projects – Patient Experience Research Centre).

Gonzalez: How did you find out about this event and why did you want to be involved?

I have always been interested in participating in something like this and I have wanted to be part of medicine and medical research. I contracted COVID-19 in 2020 and I was in an induced coma for 18 days. I have a lot of gratitude for the healthcare professionals who took care of me and the research that helped in medical decision-making to support my care, so I also wanted to give something back to the research community.

Kim: What questions did you ask visitors to the Ealing Community Event about your project?

The questions I asked were:

1. If your child has a respiratory infection, who do you contact first? Has this changed since the COVID-19 pandemic started?
2. What works best for you in terms of getting information about how to care for your child when they are unwell with a respiratory infection? (Information from the doctor’s office, internet sources, social media, opinions from trusted friends/family members, information from your child’s school, other?)
3. If you were involved in providing feedback for a long research project, what would work best for you? (Online meetings, face-to-face meetings, whole community events, other?)
4. I plan to secure funding to cover costs related to childcare, travel and food on the day of any meetings/events. I also hope to be able to cover any costs required for translation of materials/resources or interpretation. I will also provide payment to cover community members’ time for involvement in this project. Are there any other things I should consider that might help reduce barriers to public involvement?

If visitors did not have young children, they were asked to answer the questions reflecting on their own healthcare seeking behaviour, or their experiences with older children, grandchildren or nieces/nephews. Community visitors shared their views in response to each question, highlighted challenges they have faced in accessing health care and highlighted the differences in the way they approach seeking healthcare and GP visits since the covid-19 pandemic started.

Kim: What did you learn from the community visitors at this event?

The reflections from the community visitors in response to questions 1 and 2 about how their approach to GP visits for children’s respiratory infections have changed since the covid-19 pandemic were very helpful in terms of re-thinking my original research question and study plans.

Parents/carers all spoke about how they felt their interactions with GPs have drastically changed since the covid-19 pandemic. They highlighted the confusion they now feel about when and how to seek healthcare for their children and some now rely on ‘following their instincts’. Many mentioned the messages they received during the pandemic to “stay at home, protect the NHS, save lives” stayed with them and they now feel as if they are a burden on the NHS when considering seeking healthcare.

Many mentioned they now try to manage more minor illnesses at home and when they do contact the GP, several mentioned the challenges they’ve found in getting an appointment, particularly ones face-to-face. Some people mentioned they now try to seek help in other ways other than contacting the GP first, such as contacting the pharmacy, calling 111 or visiting urgent care, but some expressed disappointment in the quality of those services.

Many community visitors also expressed concerns about the differences they have observed among their peers in the community. They felt that some people are having greater difficulties than others in terms of knowing when and how to access healthcare, and perhaps some were less ‘savvy’ about how to access information when needed. In the discussions, community visitors hypothesised this may be related to health literacy or ethnicity, and they specifically felt that ethnic minority populations have faced more challenges in accessing healthcare since the covid-19 pandemic.

In the responses to questions 3 and 4, the community members stressed the importance of:

• considering individual needs,
• building and maintaining a community; and
• asking community members about their personal preferences for meeting types, location and frequency.

Most felt the plans for specific funding were sufficient but also suggested considering the timing of meetings to ensure as many people as possible could participate (e.g. term time, during school hours). These suggestions are very useful and will be incorporated into my future plans.

Kim: How will these conversations impact your research plans?

Originally, I planned to exclusively use electronic health records from GP practices in England. These discussions with visitors have emphasised the importance of considering alternate sources of data for my ongoing work. Many parents/carers said they are not always contacting their GP first, and many mentioned they have changed the ways they now navigate the healthcare system since the pandemic. These discussions suggest parents/carers may need support in terms of how to access and navigate healthcare pathways when their child is unwell, and that further discussions with members of the public in terms of qualitative research (e.g. surveys/interviews) would likely be very beneficial to help co-design effective messages about how and when to seek healthcare.

Gonzalez: What were your reflections on this event?

This was a good experience for me and overall, this whole event was very positive. I had personal experience relating to all the questions and I was able to talk about all of them. Every table that I visited, there was something I liked – all the research is very important. I liked sharing my experiences with others and I liked that there were different topics to discuss. This has made a path for me to get further involved in research and to get some training. If our conversations are going to maybe help researchers get funding for research, this is a good thing.

What advice would you give other researchers or members of the public interested in doing something like this?

Gonzalez: For researchers, I think it’s important that they check that people are happy to share the experiences they’ve gone through. If so, it’s important to speak with them to get their opinions. It’s also useful to get as many different perspectives as possible from the public and consider different ways to get opinions, such as having conversations online. I wanted to get involved because I wanted to give something back. I would encourage anyone who wants to get involved to do it – there is lots to gain!

Kim: I would strongly encourage all researchers to get input from the public into their research. In this specific situation, I used feedback from a funding application and incorporated some of the issues raised into a series of questions I posed to the public for input. This was incredibly helpful to help me determine both where and how I should revise the project to better meet the needs of both the potential funder and the community involved. A very worthwhile experience!

So, what’s next?

Kim: After the event I contacted all visitors who consented to share their information with me and provided an opportunity to co-author this blog post. I would like to thank one of the community visitors (Gonzalez) for agreeing to do so! Moving forward, I will certainly keep in touch with this group in case they would like to contribute to ongoing discussions and continue to be involved in my work.

Gonzalez: I want to be involved in research to give back and I am looking forward to more opportunities like these.