British Psychological Society funded seminar series Engaging young people in health research: Exploring innovative research designs to explore social challenges faced by young people with pain related health conditions. Seminar organisers Dr Abbie Jordan University of Bath Email: a.l.jordan@bath.ac.uk #BPSengageyouth Dr Line Caes University of Stirling Email: line.caes@stir.ac.uk 1
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Contents Introduction to the seminar series Programme for Wednesday 19 th April 2017 Programme for Thursday 20 th April 2017 Abstracts for Wednesday 19 th April 2017 Abstracts for Thursday 20 th April Map of the University of Bath p4 p5 p6 p7 p9 p10 3
University of Bath Wednesday 19 th April 2017 Exploring a range of face to face methods for studying young people with pain related health conditions. 9.30 9.45: Introduction Drs Abbie Jordan & Line Caes 9.45 10.30: Studying pain in adolescents and families: What are the key challenges? Professor Christopher Eccleston (Director of the Centre for Pain Research, University of Bath) 10.30 11.15: Using the Person-Based Approach to develop interventions for individuals with chronic health conditions Professor Lucy Yardley (Department of Psychology, University of Southampton) 11.15 11.30: Coffee break 11.30 12.15: Interrogating the self Life timelines as a tool for examining young people s lived experiences Dr Joanna White (Faculty of Health and Social Sciences, University of the West of England) 12.15 13.00: Constructing the story: Approaches to the study of pain narratives in acute and chronic pain Dr Melanie Noel (Assistant Professor, Department of Psychology, University of Calgary) 13:00 14:00: Lunch 14.00 14.45: How can we understand what life is like for a child with a chronic condition, in the present tense? An example of Participative Health Research methods. Dr Siobhan O Higgins (Centre for Pain Research, NUI Galway) 14.45 15.15: Panel discussion with all speakers 15.15 15.30: Summary and final comments Drs Abbie Jordan & Line Caes 4
University of Bath Thursday 20 th April 2017 Use of online methods: Thinking more creatively about conducting research with young people with chronic pain related health conditions. 9.30 9.45: Introduction Drs Abbie Jordan & Line Caes 9.45 10.30: Problems and pitfalls of conducting online health focused research. Professor Karen Rodham, (Department of Psychology, Staffordshire University) 10.30 11.15: Using social media in health research Professor Julie Barnett, (Department of Psychology, University of Bath) 11.15 11.30: Coffee break 11.30 12.15: "I'm stuck in this pit of sadness and despair": Young people, social media and chronic crisis communication. Dr Yvette Morey (Faculty of Business and Law, University of the West of England) 12.15 13.00: Panel discussion for all speakers 13:00 14:00: Lunch 14.00 15. 15: Interactive activity (World Café) Drs Abbie Jordan and Line Caes 15.15 15.30: Summary and final comments Drs Abbie Jordan & Line Caes 5
Introduction to the BPS seminar series Pain is a common experience in young people who experience chronic illness, and a burden for many of these young people. Young people who experience ongoing pain report poor outcomes in terms of psychological, physical, social and peer-related functioning. Whilst the impact of pain on normative adolescent development is assumed, little is known about the exact social challenges that these young people experience. Moreover, the limited work in this area has typically focused on use of more traditional methods of interviews and questionnaires to explore this area. To develop knowledge in this important area, it is necessary that the chosen research designs match both the communication mediums and styles of young people. The purpose of the symposium, kindly funded by the British Psychological Society, is to discuss more creative and/or online research methods to better engage with young people in a research context. The University of Bath seminars follow the previous first seminar which was held at the University of Stirling on 3 rd March 2017. You can find out more information about the seminar event at the University of Stirling by: 1. Searching for #BPSengageyouth on Twitter. 2. Contacting the seminar organisers; Line Caes (line.caes@stir.ac.uk) or Abbie Jordan (a.l.jordan@bath.ac.uk). 3. Visiting the Storify of the University of Stirling day - https://storify.com/linecaes/bps-stirling-seminar.html We hope that you enjoy the seminars and we really look forward to hearing your thoughts about the material presented over the coming days and how we can more be more creative in the ways in which we conduct research with young people who experience pain related conditions. Best wishes Abbie Jordan and Line Caes 6
Abstracts - Wednesday 19 th April 2017 Studying pain in adolescents and families: What are the key challenges? Professor Christopher Eccleston (Director of the Centre for Pain Research, University of Bath) Abstract: Without knowledge we still have to act. Although there is so little known about pain in childhood, there is a growing workforce of pain researchers and clinicians developing theory, methods, and interventions. The challenge is in choosing the right questions, in mobilising resource to create value, and in establishing a pathway for development. In this short presentation Prof Eccleston will present examples of research questions asked and answered, including the problems overcome, and will discuss the opportunities for new challenges in paediatric pain. Using the Person-Based Approach to develop interventions for individuals with chronic health conditions Professor Lucy Yardley (Department of Psychology, University of Southampton) The aim of the person-based approach is to ground the development of interventions in a sensitive awareness of the perspective and lives of the people who will engage with them, obtained particularly through iterative qualitative studies. This approach enables the researcher to understand how people may experience the intervention, which elements may seem most relevant and useful to them and which may be rejected - and thus how the intervention can be made more attractive, persuasive and feasible to implement. This talk illustrates the process with examples of some insights gained from our experience of using the approach. Interrogating the self Life timelines as a tool for examining young people s lived experiences Dr Joanna White (Faculty of Health and Social Sciences, University of the West of England) This session explores the use of life timelines as a tool for establishing rapport with young people during research interviews and capturing their experiential journeys, focused on particular themes. The strengths and challenges of the tool are detailed. The construction of safe space, the sense of co-production, and the (sometimes surprising) outcomes and learning points for both researchers and interviewees are detailed, with examples from an ongoing UWE peer research project, which focuses on gender relations, intimate relationships, and sex and relationships education and support needs amongst young people. The session will also provide delegates with hands-on practice of using the timeline. 7
Constructing the story: Approaches to the study of pain narratives in acute and chronic pain Dr Melanie Noel (Assistant Professor, Department of Psychology, University of Calgary) Stories form the fabric of our identities and set the stage for all future experiences. Parent-child narratives about past painful events frequently occur and provide a powerful context through which social and emotional responses become socialized and pain is understood. Dr. Noel will discuss narrative based approaches that she has used in her research program to investigate parent pain narratives in the context of pediatric chronic pain (macro level coding system) and parent-child pain narratives in the context of pediatric surgery (coding of parental reminiscing style, content, affective tone). Future directions and clinical implications of this work will be highlighted. How can we understand what life is like for a child with a chronic condition, in the present tense? An example of Participative Health Research methods. Dr Siobhan O Higgins (Centre for Pain Research, NUI Galway) Much of my work seeks to promote and uphold children s right to speak out, be heard, and to have their views considered in decision-making, particularly in the context of research relating to their health and wellbeing. But true engagement with children, in a real sense, is not that easy. This session will give a hands-on example of how to understand the health and wellbeing of children living with chronic conditions. Participative health research has the potential to not only capture perspectives and experiences, but also to provide opportunities for children to shape research topics, research methods, and the interpretation and reporting of findings. 8
Abstracts - Thursday 20 th April 2017 Problems and pitfalls of conducting online health focused research. Professor Karen Rodham, (Department of Psychology, Staffordshire University) Much of my work focuses on how people cope with difficult/chronic health conditions. I have experience of working as a health psychology NHS practitioner and as a researcher in the field of pain. More recently my research has been conducted online. In this session I will share with you some of the problems and pitfalls myself and other researchers have faced and (sometimes) overcome. My hope is that you will be able to learn from our experiences and in so doing, avoid the problems and pitfalls in your own work. Using social media in health research Professor Julie Barnett, (Department of Psychology, University of Bath) Increasingly user generated content that is not elicited in the context of research is a resource for exploring health related issues. The contributions to patient support groups perhaps have the most established pedigree in this regard. However there are now a range of other possibilities. In this presentation I will review some studies that may be useful in stimulating consideration of how social media content and the methods used to capture and analyse it may prove useful in the context of pain research. I will provide examples related to allergy, cystic fibrosis and obesity and e.coli as a basis for discussion. "I'm stuck in this pit of sadness and despair": Young people, social media and chronic crisis communication. Dr Yvette Morey (Faculty of Business and Law, University of the West of England) This session is based on a study of self-harm content shared on social media sites, in particular the micro-blogging platform Tumblr. The study explored both the types of self-harm content that were shared, as well as the communicative practices that shaped how and why content was shared. Amid concerns about the proliferation of unregulated self-harm content on social media in recent years this session explores whether social media sites such as Tumblr provide digital spaces for the expression and communication of chronic adolescent crisis. 9
The seminar is being held in room 2.47 in 10 West. 10