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Capturing the Experiences of People with Chronic Illness during COVID

A Q&A with Dr Anna Hood

In June 2020, after months of preparation, Dr Anna Hood and her collaborators launched ATTACH, a study spanning the UK, USA and Mexico. ATTACH, which stands for Attitudes about COVID-19 and Health, is unique for two reasons. In addition to a monthly survey, it collects daily information from participants, giving Dr Hood’s team real-time insight into how the pandemic has changed people’s lives. It also focuses on people with chronic illnesses—a group that has received less attention than others but has been affected in unique ways during the pandemic.


Dr Hood is a lecturer at the University of Manchester in the Division of Psychology and Mental Health, and she is a member of the Manchester Centre for Health Psychology collaborative network. She is also a clinical psychologist qualified in the USA and the UK. She recently spoke with COVID-MINDS, describing the challenges of setting up an app-based study that required extensive technical and ethical approval, as well as the lessons she thinks she and other researchers can take forward into 2022 and beyond.





1. Tell us about the early days of the ATTACH Study.


AH: At the time, I was based at UCL at the Great Ormond Street Institute of Child Health and we focused on mental health issues and the neuroscience of sickle cell disease. The pandemic brought our studies to a stop, but we were still thinking about the mental health of people with chronic diseases and how to capture their experiences using the expertise in our lab.


2. Were there any challenges in setting up the study?


AH: We submitted our ethics application quite quickly, but it took a long time to come through because there were so many other studies alongside ours. So that was a big challenge. We were also partnering with an app company (Air My Opinion), and getting that ethically approved was difficult, as was getting our questionnaires onto the app. There was a lot of COVID misinformation at the time, and both Google and Apple were being really strict. They had someone review our studies repeatedly every time we made a change. So I think we started the approval process at the beginning of April, but we didn't really start collecting data on a large scale until the beginning of September.


3. Was there any particular reason why you wanted to use an app-based survey for your target population?


AH: We were trying to reach people who wouldn’t normally do online surveys. The app was already developed; we just needed approval to get ATTACH onto it. It is a polling app and so essentially we could ask questions in real-time. We sent 2 questions a day at 10 am and 2 pm. So we were able to capture how people were experiencing Covid on a daily basis. And then, we also did a more traditional monthly survey. So it was really nice to be able to combine those two types of data and see how the daily pressures might differ to monthly responses. And we could change those daily poll questions as new variants and vaccines came into play. We could ask people how they were feeling about these things on that particular day rather than ask them to think about how they felt a month or two earlier.


4. Was there anything about those immediate results that differed significantly to the monthly data?


AH: We’re doing a network analysis of all the daily poll questions collected in the last year and our next step will be to compare these to our monthly responses. We’ve mainly got older adults and people with chronic illnesses, which is a real gain because that was the expertise of our lab. We’ve looked at personal wellbeing, mood, feelings about government responses… it has varied quite a bit.


"Those with chronic medical illnesses had some protective factors, including having more people in the household. But this depended on inequities."

5. What have you learnt about how older people and those with chronic illnesses coped during the pandemic?


AH: We went into the study thinking that older adults would experience worse mental health and loneliness. But actually, we saw that younger adults had higher levels of mental health symptoms. And those with pre-existing mental health conditions, as one would imagine, were also experiencing worse mental health than those without. Those with chronic medical illnesses had some protective factors, including having more people in the household. But this depended on inequities. So coming from a more deprived region seemed to relate to worse loneliness, depression and anxiety, and it really seems to have had a large effect on quality of life. We’ve also got partners in the US and Mexico who have been collecting data so next we’re hoping to look at cross-country differences in mental health.


6. What do you think are the main mental health lessons we've learnt from the pandemic?


AH: We’ve learnt that the pandemic has exacerbated the challenges that people from marginalized or minoritized communities were already experiencing. It’s really made it clear how those differences are magnified. I think the other big lesson is the differences that we're seeing in terms of different types of mental health conditions and disorders. So, for example, many of those with anxiety before the pandemic lost their stressors, such as leaving the home, for example. But that doesn't mean that their anxiety symptoms have gone away and as we move out of the pandemic, it will be interesting to see how that changes. On the other hand, the pandemic did not help people with depression. As a clinical psychologist, many of the things I'm asking people with depression to do is to go out, be with people and do activities to help maintain their mood. And those things weren't available to us as tools. So I think the pandemic has really highlighted that as well.


"We need those with lived experience of mental health to be co-producers and partners in our research and to help us drive the questions that are important to them."

7. What do you think will be the long-term effects of the pandemic on mental health?


AH: We're starting to learn more about the interaction between physical health and mental health and how that's going to play out. I think we're really just at the tip of the iceberg of that. I think we're also going to start seeing an increasing need for mental health services, and we're going to need to see how we can support people as they move through the pandemic, which is going to be an ongoing stressor.


8. How do you think we, as researchers, could be better prepared for future crises or pandemics?


AH: I think it will be important to maintain connections like this, like with COVID-MINDS. I've been lucky enough to have had multiple researchers reach out to me, and so we've been able to start connections both in the UK and internationally. So I think having built those connections, we will be more prepared for the next large-scale crisis or pandemic.


Regarding Covid, we need to do more research, but we need those with lived experience of mental health to be co-producers and partners in our research and to help us drive the questions that are important to them. We'll only really understand that if they have power within our studies and we partner with them.


9. What’s next for the ATTACH Study?


AH: We have published our first paper (https://mental.jmir.org/2021/10/e29963/) and next we have another recruitment push this month in February and we are going to try to capture students’ experiences. We've been very much focused on older adults, but we are transitioning back to young people. We’re also hopefully publishing some of the data related to our parent cohort in the UK, the US and in Mexico. We have a cohort of about 400 to 500 parents across these three countries. We’ve also partnered with Goldsmiths, the TOUCH study, and they had some prior data from before the COVID-19 pandemic from a similar population that we have. So we’ll be able to compare pre- and post-Covid for those two cohorts. I'm really excited about what we have coming up. It is different to what I actually do as a paediatric psychologist working with children experiencing pain. That’s why I've been wanting to make sure that we include as many people with chronic illnesses as possible because I know how high levels of mental health are in those populations. I think moving forward, one of the strengths of ATTACH is that we can capture these experiences.