Article Text
PDF
Statistics from Altmetric.com
There is a growing recognition of the need to include children and young people (CYP) in health research. Increasingly, funding bodies emphasise early engagement with those with lived experience, and to recruit participants who represent the diversity of the remit of the study. People with life-limiting conditions are typically under-represented in research because of their perceived vulnerability and as such, key voices are not represented in the research on which practice is based. While effective recruitment strategies can begin to address the breadth of CYP participating in research, data collection methods must meet their diverse needs, experiences, ages, stages of development and values to maximise the likelihood of engagement and involvement. We will outline participatory research methods aimed at facilitating CYP contribution to studies, drawing on our research and experiences of working with CYP with life-limiting conditions.
Engaging CYP with life-limiting conditions in research
Together for Short Lives and the Association for Paediatric Palliative Medicine established a joint research group to promote evidence-based practice for CYP with life-limiting conditions.1 The group promotes how ethics committees and editorial boards should consider the approaches researchers take to undertaking research and the methods they employ with this group. It is a moral and ethical imperative that CYP are enabled to participate in research, and that the findings and their implementation represent their unique needs.
What research methods can be considered when collecting data from CYP?
Participatory research methods enable CYP to engage, participate and express themselves in a supportive, typically fun environment.2 3 A range of interactive data collection methods have been used to engage with CYP (table 1). While the methods themselves support the generation of robust data to meet study aims, they can also help build effective relationships between participants and researchers, shape the narrative developed and enable the coproduction of knowledge.
Advantages and disadvantages of participatory data collection methods
These ‘enabling methods’ can be valuable, supporting the sharing of rich experiences. They allow those who find it hard to express themselves to reveal more detailed and emotional stories than would be captured using traditional methods.4
What have we learnt from undertaking research with CYP in palliative care contexts?
Although more studies are emerging that engage with CYP, there are still many studies within the palliative care field relying on proxy involvement of professionals and parents or other carers to represent the views of CYP with life-limiting conditions. Indeed, the voice of CYP with neurodegenerative conditions, who could offer insight into their experiences, in research is lacking.5 In our own work, early engagement with CYP in the research design process enabled trust with families and CYP to feel comfortable in sharing their perspectives. Building rapport took time, commitment and engagement in activities outside of the study itself, to share information and explain our perspectives, in order for CYP to feel able to be involved and share their views. We benefited from the support of a young person with life-limiting conditions as a research team member and from an advisory group of young people, their siblings and parents. These foundations have supported the development of our studies, demonstrating our commitment to research that is of real-world relevance and importance to the CYP target population.5 6 We spent time undertaking consultation activities and delivering workshops to explore research foci and how various methods of engagement could be used.6 7 The workshops and activities undertaken used a range of data collection methods that have included digital Trello boards, closed Facebook group, X (formerly Twitter), Zoom and Teams discussion/activities.
Participatory methods can be used to scaffold or enhance results gained from more formal methods. Making data collection relevant to the developmental stage of the CYP, their personality and preferences is important. Not all CYP enjoy art, or have the confidence to join discussion groups or the latest technology or unlimited access to Wi-Fi, and methods must be relevant to the developmental stage and ability of CYP. Therefore, a mosaic approach, using a range of data collection strategies, can allow researchers the flexibility to meet the needs and preferences of participants. For example, children will often prefer to communicate with a range of senses, whereas young people may prefer to engage with more formal interview techniques or photographs where they can have some degree of autonomy. Measures validated for the population/age group are important but asking CYP questions about the suitability and burden of completing such activities and if the mode of delivery is suitable will help researchers to shape future studies. Participatory methods can also be used to scaffold or build on the results gained from more formal methods.
Conclusion
We have outlined some research methods that can be used with CYP. For these methods to be successful, building rapport and trust with participants prior to data collection is needed. It is important that researchers consider not only CYP participation in research, but supporting CYP to engage with, shape and understand studies that affect them. The use of creative activities alongside more traditional research methods can reduce barriers, enable CYP to feel comfortable and encourage their participation. Future research exploring the mechanisms and outcomes of CYP research incorporating creative participatory methods in different healthcare contexts would prove insightful for researchers considering research designs and particularly their methods of meaningful engagement.
Ethics approval
Not applicable.
Footnotes
X @ARodriguez339, @MJTatterton, @josmith175
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.