The Somatic Practice and Chronic Pain Network is starting a series of blog items called ‘Meet our Board’. Over the next few months we will share various items introducing members of the new Board. The Network is keen to build a space that is respectful, safe, inclusive and active.
For the first up in the series we have Professor Bernie Carter who was Co-I for the first iteration of the AHRC network that ran from 2019-2021. Bernie and Emma Meehan (PI of the AHRC Project) worked hard to ensure the longevity of the Network and now, in 2023, the Board is composed of both established and newer people.
Bernie Carter, Professor of Children’s Nursing, Edge Hill University, UK.
Bernie has a long history of working in an interdisciplinary fashion both when she was in practice as well as a researcher. She is a children’s nurse who worked clinically within children’s surgery, neonatal intensive care, children’s high dependency and children’s intensive care settings in various hospitals in the North West of England. Whilst in practice, she found she had more questions than answers; this was the start of a research career, although she did not know this at the time. Bernie is a Fellow of the Royal College of Nursing for her work on children’s pain and President of the Association of British Paediatric Nurses. She has loved being part of the Network.
Bernie absolutely believes that research can be fun and is good for the soul, not least because it provides many challenges and opportunities for problem-solving. She sees consulting with children, young people and other stakeholders as a key element of all research1. Without engaging stakeholders in all aspects of research from design to dissemination we cannot ever truly undertake research that respects their wishes and priorities.
Bernie’s Research
A lot of Bernie’s research focuses on children and young people whose lives are disrupted by illness, disability, complex health care needs and disadvantage, and the ways in which this affects their parents, brothers and sisters and family life. Bernie is particularly interested in understanding more about how children, young people and adults experience pain and the challenges associated with assessing pain, particularly for children with profound cognitive impairment. She is also interested in communication 2 and how working ‘in relation’ can support people in pain3. Some of her work has looked at the role of reassurance in helping children manage pain4. Her interest in chronic pain is one of the reasons why she was keen to join Emma Meehan as a Co-I for the Network as it gave her the opportunity to explore pain from different disciplinary perspectives and learn more about somatic practice.
She really enjoys using creative, participatory, narrative and arts-based methods for generating data and these methods are particularly useful when working with children5, but they also open up opportunities for sensitive ways of working with participants across the generations and life course. Using creative methods for dissemination such as poetry 6, illustration and animation7 can help findings from research and key messages to reach people who matter such as children, families and professionals. ‘Communicating Lily’s Pain’ is an example of an animation8 that she co-produced with parents and that drew on their experiences and ideas woven together with findings from Bernie’s research9 10. The image below is from the animation ‘Communicating Lily’s Pain’ and depicts how the mother uses both clinical and figurative language to describe her child’s pain to professionals. It was created with the artist James Munro from Mister Munro Ltd.
Hopes for the Network
Bernie’s hopes for the Network are that it will continue to grow and provide a means for sharing ideas and fostering new knowledge and interdisciplinary understanding. Her favourite moments as a member of the Network include having her perceptions and assumptions challenged and her thinking transformed.
What books?
Bernie is an avid, eclectic and voracious reader. She is always reading, often reading rather too many books at the same time.
And at the time of writing this blog entry, Bernie is reading Babel by R.F. Kuang, a novel that is wonderful, strange and quite hard to describe. It is set in 1836 in ‘an Oxford’ and involves colonialism, linguistics and translation.
She is also re-listening to The Rivers of London series by Ben Aaronovitch which involves magic, London, a policeman and a strange array of other characters.
And, she is about to re-read Jon Sparks’ ‘Three Kinds of North’ (this book is by her partner, Jon Sparks). She thinks it is pretty darn good and she’d encourage everyone to read it)
Contact: bernie.carter@edgehill.ac.uk
References
1. Rouncefield-Swales A, Harris J, Carter B, et al. Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review. PLoS ONE 2021;16(6):e0252774. doi: 10.1371/journal.pone.0252774
2. Carter B. Chronic pain in childhood and the medical encounter: professional ventriloquism and hidden voices. Qualitative health research 2002;12(1):28-41.
3. Carter B. Pain narratives and narrative practitioners: a way of working ’in-relation’ with children experiencing pain. Journal of Nursing Management 2004;12(3):210-16. doi: 10.1046/j.1365-2834.2003.00440.x
4. Carter B, Harris J, Jordan A. How nurses use reassurance to support the management of acute and chronic pain in children and young people: an exploratory, interpretative qualitative study. Paediatric and Neonatal Pain 2021;3:36-44. doi: 10.1002/pne2.12045
5. Carter B, Ford K. Researching children’s health experiences: The place for participatory, child‐centered, arts‐based approaches. Research in Nursing & Health 2013;36(1):95-107. doi: 10.1002/nur.21517
6. Carter B, Sanders C, Bray L. Getting poetic with data: Using poetry to disseminate the first-person voices of parents of children with a disability. Patient Education and Counseling 2018;101(1):166-70. doi: 10.1016/j.pec.2017.07.001
7. Saron H, Munro J, Young R, et al. ‘ZOOMing’ in on Consulting with Children and Parents Remotely to Co-Create Health Information Resources. Children 2023;10(3):539.
8. Carter B, Young R, Munro J. “Communicating Lily’s Pain”: A reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment. Paediatric and Neonatal Pain;n/a(n/a) doi: https://doi.org/10.1002/pne2.12074
9. Carter B, Arnott J, Simons J, et al. Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers’ Perspectives. Pain Research and Management 2017;2017:2514920. doi: 10.1155/2017/2514920 [published Online First: 2017/03/26]
10. Carter B, Simons J, Bray L, et al. Navigating Uncertainty: Health Professionals’ Knowledge, Skill, and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment. Pain Res Manag 2016;2016:8617182. doi: 10.1155/2016/8617182 [published Online First: 2016/12/21]
