Jacq is a Paediatric Research Nurse, working in the Richard Desmond Children’s Eye Centre and NIHR Moorfields CRF. In 2018 she started her Nursing PhD studies at City, University of London.
What was your journey to ophthalmology?
I qualified as a Children’s Nurse in 2001 at the University of Southampton, and continued to work in a variety of paediatric settings in London and Leeds, with a year spent nursing out in Australia. In 2010 I moved back to London and took my first Research Nurse role at Great Ormond Street Hospital (GOSH), in the Somers Clinical Research Facility (CRF). I knew instantly that working in research was for me, I was fascinated working closely with consultants from many paediatric specialties as they studied advances in treatments and diagnoses. I admired the families who joined research projects and found it very rewarding to support their research journey, which can often require huge commitment and be physically and emotionally exhausting.
In 2014 I moved over to Moorfields Eye Hospital NHS Foundation Trust, taking over from one of the GOSH research nurses who had been temporarily helping out at Moorfields. I took up what then turned into a permanent position, overseeing studies of Dr Annegret Dahlmann-Noor in the Richard Desmond Children’s Eye Centre.
I had never worked within Ophthalmology before, but I was excited to gain experience within a new specialty, learning about the needs of children and young people and their families, and facilitating their involvement in eye and vision research.
Five years later, I continue to thoroughly enjoy working with families at Moorfields Eye Hospital. I have learnt a great deal about eye and vision research. I have also spent time focusing on the standards of research care for children and young people, together with working to explore the family and staff research experience.
Can you talk about your current research?
In 2017 I was competitively awarded a National Institute for Health Research (NIHR) Moorfields Clinical Research Facility and Biomedical Research Centre (BRC) doctoral studentship. My PhD project aims to co-design robust interventions with children, young people, their families and researchers, to promote a child-centred model of research care to improve the paediatric eye and vision research experience.
I am studying at City, University of London, currently finalising the study protocol and with a systematic literature review underway. The literature review aims to gain a collective picture of paediatric ophthalmic research participation experiences, including factors which positively or negatively impact on experiences.
Once approvals are in place, this study will use Experience Based Co-Design (EBCD) methodology, within the Always Events® Framework supported by Professor Sir Peng Khaw and Dr Roxanne Crosby-Nwaobi (Head of Research Nursing). Through the ‘discovery phase’ of EBCD, we aim to achieve an in-depth understanding of issues which impact on the experience of taking part in eye and vision research for children, young people, parents and researchers. The ‘co-design phase’ will facilitate collaborative co-design of the improvement interventions.
Has the NIHR played a role in your work? If so in what way?
My work as a Research Nurse at Moorfields is supported by the NIHR within the NIHR Moorfields CRF. In relation to my PhD project I have benefitted from NIHR support in many ways. NIHR Moorfields BRC have generously fully funded my PhD project, in addition all members of their core team have provided advice and enthusiasm for my work which I appreciate immensely. I have also benefited from excellent NIHR training opportunities. For example, the NIHR Infrastructure Doctoral Research Training Camp ‘Attracting further research funding’ in 2018.. As part of my PhD project development I also made use of the NIHR Research Design Service.
What do you think the future holds in the field?
Through developing my PhD project I have had the opportunity to co-develop the new Moorfields Young Person’s Advisory Group (YPAG) for eye and vision research. This is a really exciting opportunity for children and young people to improve eye and vision research, working together with researchers. The Moorfields group is a new addition to the GenerationR Alliance, a national network, who help shape all aspects of research https://generationr.org.uk/. Our YPAG is in the early stages of development, however once fully fledged, will be a valuable resource for eye and vision researchers who are keen to involve children and young people in their research design, development and communication.
As plans for project Oriel pick up pace, it is essential we think about the needs of children and young people participating in research. Protocols and information must be acceptable and accessible to children and young people, to ensure that accurate and meaningful data can be collected. However, the importance and impact of the environment on the experience of children and young people participating in research should also not be overlooked. We need to work together to ensure the environment and set up for paediatric research within project Oriel is fully considered.