Co-Production and Children's Voices
Hearing and understanding the voice of children, young people and their families underpins the ethos of SCYPHeR. Rather than being the subject of research, children and young people, and their families should shape research that focuses on the issues important to them.
We believe that involvement of children and young people, and their families, in research must not be tokenistic, and as a very minimum, they should be consulted about the relevance of the research to meet their needs, with the co-production of research the ideal.
Rather than standing alone, we consider co-production a crosscutting theme that will enable children, as appropriate, young people and their families to contribute to the research agenda and priorities across all themes and SCYPHeR activities.
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If you'd like your research to be featured on this page, email us at scypher@sheffield.ac.uk.
Theme Coordinators
Professor of Nursing in Child Health - joint appointment between School of Health & Social Care, College of Health & Wellbeing & Life Sciences, ºù«Ӱҵ Hallam University and ºù«Ӱҵ Children’s Hospital Foundation Trust
Professor Jo Smith is a registered adult and children’s nurse with extensive leadership experience both in NHS settings (primarily supporting children with complex surgical needs) and academia.
Jo's research areas include involving children, young people with a long-term condition and families in care decisions; and interventions, in particular digital applications, to support children and young people with life limiting/threatening conditions that meet their psychological and existential needs.
Contact: joanna.smith@shu.ac.uk or joanna.smith94@nhs.net
Research spotlight
Dr Jill Thompson was a co-investigator on a collaborative research and development project to produce a mixed realities (physical, augmented and virtual reality) play kit to help prepare children to have an MRI scan without a general anaesthetic. Children were included throughout the research projects, as co-designers and testers of the play kit. See below for more details including a clip which was filmed for the CBBC show 'Operation Ouch'.
Research spotlight
Background: Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers' experiences of patient and public involvement in a neonatal research project.
Methods: A qualitative design was employed, consisting of two focus group interviews, one dyadic interview, and four individual interviews with parents and researchers. The interviews followed a semi-structured guide specific to both parents and researchers. Data were analysed using content analysis as described by Graneheim and Lundman.
Results: A total of nine parents and four researchers participated in the study. Seven themes were consolidated into three core concepts: Embracing the ethos and pathos of patient and public involvement, Finding the path to maximise meaningful involvement, and Becoming skilled in engaging patients and the public in research. The core concepts highlighted both similarities and differences, as well as challenges and facilitators, of the experiences of the patient and public involvement process.
Conclusion: Patient and public involvement in research was a mutually beneficial process, facilitating learning and reflective opportunities for parents and researchers. However, there were challenges that emphasised the need for rapport building between parents and researchers, valuing everyone's unique perspective and expertise, with clear communication and well-defined roles and goals. These insights offer a contribution for future patient and public involvement in health research.
Keywords: Family-centered care; NICU; Neonatal intensive care unit; PPI; Patient and public involvement; Qualitative research.