Louise Meijering is Assistant Professor at the Department of Demography of the University of Groningen. In this interview with EuroHealthNet, she explains why a participatory approach to research is so important to improving health literacy among the older population and reflects on her experience of working with the Innovative Policies for Health Ageing project IROHLA, which focused on improving health literacy for older people in Europe.
What does a “participatory approach” to health literacy mean? And why is it important?
A “Participatory approach” means that you study something together with all the stakeholders involved, rather than only with your own research team. All the stakeholders identify the research problems together. The study then focuses on solving the problems. Simply speaking, you do research with your study population rather than on your study population – that's the essence of it.
Applying this approach to health literacy is important because you can bring together different people to solve problems they experience with regard to their health literacy in the broadest sense. Through that, you contribute to social change. It is an action-oriented approach that combines two elements: a scientific method and working together with stakeholders.
A participatory approach consists of different stages. First, you identify the problem or challenges with stakeholders and you carefully assess the current situation. You involve health professionals, insurance companies, municipalities, welfare organisations, and most importantly of all - people in the community. Once you know more about the situation you make a plan on how to solve the problem together with stakeholders. After that, you identify and design project activities or interventions and carry them out. Finally, you analyse the findings, formulate conclusions, and disseminate the findings. It is really important that the project is evaluated and monitored on a continuous basis. If something is going right, that’s good and you can learn from that, if it isn’t then you change your approach.
Could you give us an example of an intervention that really stood out in terms of participation?
Something that stood out to me was a study of the health needs of African immigrants in the US. It aimed to improve the health of the African community. While conducting the research the researchers found out that African immigrants had difficulties accessing healthcare. Most importantly, they felt that their health needs, their culture and their life experiences were not respected, and that they were not understood by healthcare providers. Based on the research, immigrants’ needs were identified and prioritised; these were then used to develop training for a small number of community members. These would then later help their peers in the community with, for instance, accessing healthcare. What is important in this particular example is that people from the community really were involved. You have to engage with the people involved in this situation because it is their problem: it is their health that is at stake.
Why do people, especially older adults, feel excluded from health systems? What kind of risks does this pose?
Our healthcare systems are really complex and older adults and people more generally find it difficult to navigate. Let’s say you need a walking frame as an older adult: people don’t know to which institution they should go to to get one, they are turned away by one institution, sent to another, and all of this time they have to make do without the walking frame they actually need to move around.
What I think is key in all this is that older adults look at health as an integrated part of their lives. However, healthcare systems are currently organised in many different pillars or structures, and consist of many different institutions and organisations, doctors and nurses and so on. The risk that this poses is that people get lost and they don't obtain the help they should, because they simply cannot find the right way. This is because for one problem you have to see a specialist and for the other problem you have to go to see a community nurse, but for people themselves that simply does not make sense: the problems they experience are all part of their everyday lives! That is one reason why I think people can feel excluded. Another issue could be financial. Healthcare is simply less accessible for people with fewer financial means at their disposal. People might also make choices that are not good for their health because they don't have the money needed to make a better choice for their health. For instance, healthy foods such as fresh fruits and vegetables are generally more expensive than unhealthy food, such as fast food. In that sense it's not surprising that people with a lower level of income usually suffer worse health. It also has to do with exclusion from the health system, because healthcare is expensive. In the Netherlands, for instance, you have to pay the first couple of hundred euros yourself when you need healthcare in a given year; also, a lot of treatments are not reimbursed by basic insurance coverage. So, if you don't have the money to pay for that, then what do you do? This creates different situations and experiences for the poor and the wealthy.
What can health professionals do to help ensure participation of older people in the health system?
What I think is really important is that health professionals listen to older adults and that they take them seriously. They should ask the right questions to find out what the real problems are. For instance, is it really a problem of having a sore knee or is there a problem behind that, such as loneliness. My recommendation would be that health professionals try and understand people's health problems as a part of their everyday lives rather than as an isolated problem – such as the sore knee. So the professional has to know who the person is and why the person has a particular problem.
How did the IROHLA project enrich your work and research?
What I really liked about IROHLA was its inter-disciplinarity and international scope. We worked with people in public health, communications science, medical scientists, while I am trained as a cultural geographer and work in a demography department, so there are different perspectives on the same issue that I find really interesting and inspiring. We worked with partners in many different European countries, and it was nice to work with people from Greece, Hungary, Italy, and the UK and learn more about health systems in those countries. I also realised that a lot of my other work is actually related to health literacy. For example, I also work on well-being of older adults, and I found that health literacy and older adults’ experiences of their health and health system also affect their well-being.
What is the main outcome you hope to come from the IROHLA project?
What I hope is that older adults with low health literacy in Europe feel like they are in charge of their own health. That they are aware of their own health, that they know what to do when their health deteriorates and that they get the information they need from their family, friends and health professionals. They should be able to see the skilled professionals they need to, and be able to ask questions. Health professionals should have the time to listen to them and provide the most appropriate treatment. The end result would be that older adults make informed choices about their health.
This interview was first published on the EuroHealthNet website at 10.12.2015.