In 2020 the National Institute for Health Research funded a youth participatory health research project in a school in the North of England in the UK. A total of nine young people aged 17 – 18 years of age participated throughout a year of Covid-19 lockdowns, designing, conducting, analysing, writing up and disseminating their own research projects. The project took 40 hours of in-school time with Kaz Stuart from the University of Cumbria supporting the young people throughout their projects.
Three groups were formed with each group investigating a different topic. One group investigated young people’s self-image on a national scale, another investigated the impact of home learning during lockdown on A-level students’ wellbeing at their school, and the third group researched the impact of lockdowns on young people’s self-image nationally. Each group produced a final research report which was disseminated to funders, policy makers, and relevant statutory and voluntary organisations. Two groups presented their findings to a group of local stakeholders at a celebration event. The three sets of findings offer a valuable understanding of young people’s lives and how they can be better supported in contemporary society.
The young people reflected on their experience at the end of the project, and these were recorded in their work submitted for a level two national qualification in youth research and in their evaluation forms. These showed the value of youth participatory health research to the young people in developing their knowledge, confidence, skills, and career prospects.
The United Nations Convention on the Rights of the Child (1991) states that children have the right to express their views on all matters affecting them and to have those views given due weight. This implies the right to express their views on young people’s health and on how health research is conducted. These two perspectives can usefully be combined in youth participatory health research where young people both investigate health issues of their choosing with a method they deemed appropriate.
More locally, the health and social care context in the UK equally espouses young people’s right to have a voice and to participate in decision making. For example, the Public Health England Framework for Young People’s Health (2014) and the National Institute for Health Research INVOLVE standards (2021) both advocate for young people’s participation in research design.
And yet, our literature review of youth participatory health research in the UK in the last two decades found only twenty examples of health research led by young people; that is, policy is not translating into practice. This policy-practice gap was the catalyst for this project as we sought to understand, overcome and document the process of youth participatory research in a health context. In so doing, we hoped to make this methodology more accessible to other practitioners and researchers. The project took place in William Howard School, a secondary school (11 – 18 age range) with a very diverse student base in a rural location in a market town in the North of England. In December 2020 Kaz visited the school to explain the project to health and social care and psychology students in their first year of A-level study. At the end of this hour long session all 25 students signed and returned consent forms indicating they wished to take part.
Research Goal, Method, and Outcome
The research goal was to understand how youth participatory health research could be conducted in schools in the UK in order to leverage more such projects. Kaz had learned much from a pilot youth research project with the National Youth Agency (Stuart et al., 2020). Here was a significant funded opportunity to put that learning into practice supporting a youth participatory health research project and a number of secondary-school students who were enthusiastic and willing to participate in youth research.
The method for the research was nested – there was simultaneously the health research projects conducted by the young people and the research into the process of youth participatory health research. These are intertwined in that the first project is the subject of the second and also distinct in that the youth projects are disseminated independently as robust research projects in their own rights (Routlege and Robson, 2021; Graham, Davies, Trennel and Stephan, 2021). This process-oriented research project was also participatory in nature, in that the young people and staff were all participants in the process as well as authors of the research.
The data collection tools were naturalistic. The young people generated materials which became documentary evidence. This included notes, charts, plans, reports, accreditation evidence and evaluation forms. Equally, the staff also generated materials as they worked such as session plans, resources and a researcher diary, and these also became sources of documentary data. For this paper, themes were elicited from youth researchers’ remarks and instances.
Reasons for Engaging in the Project
In the final evaluation the students provided a range of reasons for engaging with the research project. For some the project offered the opportunity to learn more about research, for others learning about their own research topic was the motivation and others again wanted to strengthen Curriculum Vitae and personal statements with the accredited outcome:
- I am doing A-level psychology so I was interested in furthering my research skills. Also the chance of getting a qualification was appealing as well.
- I felt like it was a good opportunity to get some good insight into a topic that could be interesting. Also I wanted to add to my CV.
- After experiencing learning in lockdown myself, the research was a perfect opportunity to be able to highlight the issues and prevent them in the future.
- To experience conducting research, to have something to put on my CV that appeals to universities, to highlight the issues that I and others experienced while learning in lockdown.
- To get a qualification but also to find out how academic research is carried out.
These statements indicate the importance of offering accreditation and the value students attached to independent study and extra-curricular learning opportunities.
What Worked Well
The young people identified a range of things that they most enjoyed. Whilst varied by task, the commonality to all of these was doing an authentic research task themselves, owning the work and its outcomes:
- Sending out the survey across social media because knowing that was our work and anybody could see it.
- The most enjoyable aspects have been the analysis as we were able to see how others felt about a situation that we were also put in. It also made the research easier as we could understand what others went through which gave us more to explain our conclusions for example.
- Working as a group, seeing how effective our questionnaire was and putting together the report.
- Compiling our data and analysing as it gives us a sense of accomplishment seeing good data sets that we received.
The young people had experienced the project as different to normal school, which was positive given the intention to level power structures, empowering the young people to control the research projects themselves. In this, the university staff were not teaching research, but facilitating young people to do their own research. The fact that it was experienced as different confirms this research opportunity may have been successful:
- This has been a lot more free than normal school. We could decide on the topic and there was no teacher forcing us to do anything.
- This research has allowed us to display a large range of ideas as there are no right and wrong answers in ‘normal’ school experiences.
- It has been a really relaxing time despite getting lots of work done we could chat to Kaz and our group meaning we all got to know one another.
- Quite different as we have much for freedom which was good.
- It has been very different as it is more like a real-life scenario and actually can change the outside world.
- The staff were very helpful and friendly and definitely helped the group’s reach.
- Really supportive and helpful, and also really approachable which makes me want to take part in future research.
- Great, the university staff take our ideas seriously and guide us rather than taking charge.
- Very good it’s a more independent way of working and gives us more freedom.
For some, the opportunity to work with external staff was also an enjoyable experience:
- We have been able to meet and work with some really lovely people – Kaz has developed our skills in research and highlighted a liking for it.
It may be that external staff who are not imbued with the power relations of schools are in an ideal situation to be able to offer a more equitable style of working – it could be very difficult for teachers to do this without role tension.
In addition to these comments, we reflected as a team that protected time during the school day was an important success factor. The young people had a ‘free lesson’ from 11:15 till 12:15 and 12:45 till 1:45. We worked together during this time and ensured that they had no tasks to carry out at home. This arrangement ensured the research activities did not clash with other homework priorities. The young people also reflected that working on the project over an extended period of time (seven months) had been useful as it gave them time to think in between sessions rather than rushing into decisions.
Whilst the project was overall positive, there were difficulties and things that were less enjoyable. The young people universally disliked working online as this mode of working hindered group interaction and decision making:
- The online lessons as they have less interaction and we worked less coherently as a group online.
- I have least enjoyed having to do the sessions online as it meant we couldn’t properly portray our ideas and chat normally.
- Teams meetings during lockdown.
The refinement of questionnaires and writing the literature review were experienced as onerous:
- Writing the questions out because everything had to be worked correctly for everyone to understand
- The literature review as it was tedious.
This reminds us that whilst young people may be keen to take part in research projects they are not necessarily skilled at or interested in all parts of research. Another difficulty encountered was in securing impact from the research. We agreed a list of organisations, national and local to whom to send the reports. This totalled 33 statutory and voluntary organisations, but we heard nothing back from any of them.
Positive outcome nonetheless. Although the lack of responses from organizations was disappointing to young people, there were positive feedback and actions from the direct stakeholders – the funders, the school and the university. The funders’ feedback was that this project would be used as an example to inspire other health organisations to do more participatory research. The school asked to meet with each project group in order to address each one of their findings and recommendations practically. The university committed to embedding more participatory research methods training into their undergraduate practitioner courses (education and health), and to revise their ethics procedures to make them more open to participatory projects. These are excellent impacts within stakeholder groups, but we were all frustrated to have had so little wider response to this work.
What are the Benefits of Youth Participatory Health Research (YPHR)?
The young people were all able to identify elements of the YPHR project they were satisfied with:
- I’m very satisfied as I think the survey showed the true facts on self-image and the results show exactly what needs to be done.
- I am very happy with the results as we collected as they are in good quality and quantity. Also I like how our research is very unique and draws into sixth form students experiences.
- Very satisfied, I feel really accomplished of the research we’ve achieved and feel we’ve brought all the issues of lockdown to light.
- Very satisfied to think our hard work has paid off.
- Very, it is a coherent and informative report.
The young people also identified that they felt pride in their projects, specifically:
- People completing our survey. If people didn’t like the design I don’t think they would have completed it.
- I am most proud of the report as it shows all the work and effort we put into the project.
- I am really proud of the fact that doing this research should potentially help people my age in the future, and that it’s proved the issues we experiences are valid and experienced amongst most.
- Our questionnaire and report as they took a lot of time to construct and really pulled our ideas and thought together.
- I’m proud of how the report turned out, it is very informative and highlights issues we have all experienced as a group.
The Covid-19 pandemic has been very difficult for many people to deal with. Many people have reported that they have struggled to find meaning and have found life stressful and difficult. For these nine students to report feeling very satisfied with their research and proud of their achievements perhaps has more merit now than in might in ‘normal’ times. The young people were asked to report how they felt they had gained from their involvement in the project. Many of them reported gains in skills, knowledge and confidence, or a combination of all three:
- I’ve gained the skills of designing a survey and how to report to show all our findings which took a long time.
- I have gained lots of knowledge of how to conduct research which may be used later in life.
- I have gained lots of group skills as we have had to work collectively with communication ideas etc., but I have also gained knowledge and confidence around doing the research itself.
- Confidence working as a small group and skills for conducting research.
- I’ve gained confidence, skills and knowledge. I can now carry out research which the skills and knowledge needed, but also increased confidence as I’ve helped create a professional report.
These statements illustrate the potential of research activities to increase young people’s skills, and the importance of participatory research with skilled advisors to support, but not take over, young people’s ideas. In addition to the written outputs all six young people who engaged in the project have gained a level 2 accredited certificate of youth research awarded by the National Youth Agency and ABC accreditation. The project has also been accredited, gaining a ‘Dialogue and Change’ award from an organisation called Children North East. Reflecting back on the project, we now wonder whether having something new, meaningful and authentic, with real choices and full control was a significant support throughout the pandemic – a time characterised by uncertainty, lack of choice and lack of control. The university staff were worried throughout that they may be asking too much of the young people, but perhaps the opposite was true, and this was a slim lifeline during a difficult period in history.
The learning from the January 2021 national pilot had been applied in this context (Stuart et al., 2021). The feedback from the young people reinforces all the points previously made about the time, mode and support needed to facilitate youth participatory research. The outcomes from this project illustrate the ability of young people to design, conduct, analyse and report their own research. The final challenge this project did not manage was dissemination – despite sending the report to many statutory and voluntary organisations, there was not one reply as to changes that had been made as a result of this work. This may seem a small final challenge, but is of the utmost significance – if the research of young people does not change the world, then why would they put their precious time and energy into it?
The impact of Covid-19 cannot be understated. These young people were in the midst of an unprecedented global pandemic. They were no longer able to go to school and no longer able to socialise with friends. They may well have also been living in families struggling to cope with the pandemic. Despite all this, they joined a new project, online, and managed to complete meaningful and authentic research projects.
Graham, M., Davies, L., Trennel, E., & Stephan, I. (2021). Wellbeing in Lockdown. Carlisle: University of Cumbria. https://www.cumbria.ac.uk/media/university-of-cumbria-website/content-assets/public/researchoffice/documents/WHS-YPR-Sixth-Form-Student-Wellbeing-in-Lockdown-Report.pdf
NIHR (National Institute for Health Research). (2021). Involve patients. Retrieved June 16, 2021, from https://www.nihr.ac.uk/health-and-care-professionals/engagement-and-participation-in-research/involve-patients.htm
Public Health England. (2014). Improving young people’s health and wellbeing: A framework for public health. Retrieved June 16 2021, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/773365/20150128_YP_HW_Framework_FINAL_WP__3_.pdf
Routlege, R., & Robson, M. (2021). Investigation on Self Image in Young People. Carlisle: University of Cumbria. https://www.cumbria.ac.uk/media/university-of-cumbria-website/content-assets/public/researchoffice/documents/WHS-YPR-Self-Image-Report.pdf
Stuart, K., Terras, D., Allen, L., Bateman, C., Clinton, C., Franklin, L., Kinnersley, L., & Linehan, S., Lucioni, L., Merrington, L., & Shaukat, A. (2021). Learning How to Support National Online Youth Led Research. Social Publishers Foundation. https://www.socialpublishersfoundation.org/knowledge_base/learning-how-to-support-national-online-youth-led-research/
United Nations. (1991). Committee on the Rights of the Child. General guidelines regarding the form and content of initial reports to be submitted by States Parties. UN=CRC=C=5. Geneva, Switzerland: Author.
To cite this work, please use the following reference:
Stuart, K., Routledge, R., Robson, M., Trennel, E., Stephan, I., Davies, L., & Graham, M. (2021, July 20). School based youth participatory health research – What works? Social Publishers Foundation. https://www.socialpublishersfoundation.org/knowledge_base/school-based-youth-participatory-health-research-what-works/