Hi, my name is Jenny. I have been working for the last 18 years on the development and implementation of child, young person, and family participation strategies to ensure their voices are heard in the design and conduct of clinical studies. In 2020, I embarked on a part-time PhD at the University of Liverpool to understand what 'meaningful participation' (otherwise known as patient and public involvement in the UK) means to children and young people. Let me tell you a little more about what my doctoral research is all about.
Context
Research and innovation are critical to improving the health and well-being of the world’s children. Paediatric Experimental Medicine Research allows for the testing of appropriate and effective treatments for babies, children and adolescents; and to address the long-term NHS commitment to tackling health inequalities and securing the best health outcomes for children and young people. Furthermore, undertaking paediatric experimental medicine research develops our understanding of childhood diseases and provides healthcare based on the best possible evidence.
Historically, children (as defined by Article 1 of the United Nations Convention on the Rights of the Child (UNCRC) as individuals under the age of 18) were protected/prohibited from participating in health research - especially medical research - as they were considered a vulnerable group that required protection. In order to protect research participants, Paediatric Regulations (No 1901/2006), international declarations and national guidelines set a number of ‘threshold’ criteria that research studies must meet; relating to the value of the research, the balance between benefits and burdens, and the management of risk. The design of any type of child-health research is subject to a detailed scrutiny process, involving both scientific (‘peer’) and ethical review, to ensure that these requirements are met.
To ensure health research meets the needs of the population, researchers, funding bodies and journal editors are increasingly recognising the potential influence patients and the public (including children and young people) have on the design and conduct of such research. In health and social care research in the UK, this is often badged under the umbrella term ‘Patient and Public Involvement’ (PPI), which has been defined as “research…carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”[1].
In other words, patients and the public with lived experience should now have a seat at the table to influence the design and conduct of health research, as opposed to being researched on. PPI can take many forms and offer opportunities for patients and the public throughout various phases of the research process, including identifying unmet research needs; research design and the development of proposals; data collection and analysis; reporting and disseminating research findings.
Children and young people are also recipients of health research outcomes as users of health services. Therefore, have a ‘right’ to also have a seat at the table and decision-making processes.
However...
Whilst policy and evidence strongly advocate for the active and meaningful participation of patients and the public in health research, we still need to better understand how to do this in practice, especially where children and young people are involved. Until recently, most of the issues highlighted in the PPI literature focus predominantly on work with adult patients and the public. In contrast, the literature pays little attention considering the benefits and challenges of developing meaningful partnerships with children and young people. More importantly, the perspectives of children and young people themselves are missing from this discourse. Recent literature has called for more research to address this deficit of understanding to strengthen and standardise monitoring and evaluation processes to track child and young person participation, explore the quality and value (i.e., outcomes and impact of such practice), and share lessons learned.
The PREPARE Study
Understanding the experiences and views of children and young people will give us a better understanding of what ‘meaningful’ participation means to them. It will also inform the development of more rigorous child-rights informed research methodology that captures the outcomes and impact of participatory practice in the design and conduct of paediatric experimental medicine.
This doctoral research is informed by a child-rights based approach (CRBA). Throughout the research we refer to PPI with children and young people as ‘child participation’. This approach is informed by the UNCRC General Comment No.12. The term ‘child participation’ is defined as an:
“ongoing processes, which include information sharing and dialogue between children and adults based on mutual respect, and in which children and young people can learn how their views and those of adults are taken into account and shape the outcome of such processes”. (UNCRC General Comment No.12, Committee on the Rights of the Child, 2009)
This research has adopted this approach as it calls for human rights to guide relationships between rights-holders (children and young people) and duty-bearers (parents, health researchers, funders, policymakers). The CRBA is a principled and practical framework for working with children and young people, grounded in the UNCRC which was ratified by the UK in 1991. The UNCRC is binding on the government and on public authorities at all levels in the UK and provides a strong ethical framework for planning, decision-making, and action. CRBA thus stresses that promoting children’s participation is not a nice-to-have, but a legal and ethical duty. Indeed, the UNCRC has formed the bedrock of research methods and ethics involving children and young people across a multitude of other disciplines, including social science, the arts, and the humanities. This research will explore how these rights are realised in the context of paediatric experimental medicine research design and conduct and within the activities of the paediatric centres. I will focus on Article 12 of the UNCRC, which states that children and young people have the right to not only express their views, but to have those views taken seriously in all matters that impact on their lives. Thus, it is highly informative for developing approaches to children and young people’s medical treatment and decision making. Taking a rights-based, participatory approach to paediatric experimental medicine research will ensure that different stages and strands of children and young people’s health care systems and treatments are underpinned by the same core values, principles, and methods.
How am I going to do this?
Children and young people in this study are understood to be competent participants and as valuable contributors in research. Six young people (aged between 14-18 years) have been involved as research partners (as young peer researchers) prior to the research starting and throughout the journey so far.
The research has two aims:
To gain insights into the motivations, experiences, and outcomes of participation for children, young people, families, and those who work with them in the design and conduct of paediatric experimental medicine research.
To use participatory research methods to develop a monitoring and evaluation tool that takes account of children and young people’s voices.
The objectives of the research are to:
Understand how children, young people and families are currently involved in the design and conduct of paediatric experimental medicine research (at an organisation level and within individual studies).
Understand the motivations of participation from the perspective of children, young people, families, and those who work with them.
Explore what meaningful participation means to children, young people, families, and those who work with them.
Explore the perceived outcomes and impact(s) of participation on children, young people, families, and those who work with them.
Explore how to empower children, young people, families, and those who work with them to self-reflect on participatory practice to inform ‘meaningful’ participation in paediatric experimental medicine research.
The research will adopt an explanatory mixed-methods design (informed by the young peer researchers), using both quantitative (surveys) and qualitative (individual semi-structured interviews and focus groups) methods.
What have I done so far?
So apart from reading the literature and tackling the messiness of ethics submissions, I undertook a framework analysis of NIHR funded research reports that are completed by researchers about the outcomes of their funded research. Within these reports the NIHR encourage researchers to describe how they involved patients and the public in the actual research process and what impact this had on the research or those involved. The framework analysis focused on the sections of reports that described the involvement of children and young people in these types of activities, not adult involvement (parents and other stakeholders). The focus was on the following questions:
What opportunities are offered to children and young people, including levels and stages of involvement?
Who is involved and how?
What are the reported outcomes and impacts of PPI with children and young people?
How do children and young people support the dissemination of research findings?
What are the reported challenges and facilitators to involvement?
Key findings
Despite NIHR guidance, the quality of reporting of PPI with children and young people (and in general) was found to be suboptimal. A full description of the demographics (gender, ethnicity, etc) of CYP was weak for most reports. Most mention the age ranges of children and young people (between 7-25 years) but it is not clear from the reports the breakdown of ages for each activity. The majority of researchers who accessed existing Young Person’s Advisory Groups (YPAGs) tended to provide minimal information about PPI activities and its impact. Only 3 research projects formally evaluated or self-reflected on PPI activities with children and young people. A summary of the methods and findings can be found in this poster.
Findings from this review will inform the development of simplified reporting guidelines for researchers that are informed and endorsed by CYP.
My next steps are to undertake further fieldwork using surveys, focus groups (with children and young people) and semi-structured interviews with adult stakeholders (parents, researchers, centre Directors, etc).
For further information about this research contact me on jennifer.preston@liverpool.ac.uk
[1] Boylan A M, Locock L and Turk A, A Researcher’s Guide to Patient and Public Involvement, < https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf >
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