Helen is the chief investigator of the REDMAPP study. She is an Advanced Nurse Practitioner for children and young people with solid tumours at The Royal Marsden NHS Foundation Trust and a PhD student at the University of Southampton. Helen has worked in paediatric oncology for over ten years having worked in the NHS and private sector. She has published with nursing and medical colleagues and most recently co-authored a chapter on treatment decision-making with colleagues internationally for a paediatric oncology nursing textbook. Helen is a member of the SIOPEN Long-Term Follow-up Sub-committee, MiNivAn Trial Steering Committee and London Clinical Academic Careers Steering Group. She has previously been a member of the European Oncology Nursing Society Advocacy working group. Helen is the founder and Chair of the National Neuroblastoma Nursing Group which was initiated to increase partnership working amongst nurses nationally caring for children with neuroblastoma.
To support the REDMAPP study Helen has presented at various conferences and meetings including the Solving Kids’ Cancer Parent Education Conference. To support this work Helen has obtained various grants and fellowships including:
- The European Oncology Nursing Society Research Travel Grant 2017. Helen met with international researchers in paediatric oncology decision-making research
- The Research Design Service Enabling Involvement Fund 2017. This supported the initial Patient Public Involvement group meeting (see PPI page) to support the REDMAPP study
- The Biomedical Research Centre Royal Marsden/Institute Cancer Research Biomedical PPI Grant 2019. This support co-designing this research study website with parents.
- Helen was successful in receiving the highly prestigious National Institute Health Research (NIHR) Clinical Doctoral Research Fellowship which she will begin in January 2021. This NIHR fellowship will support Helen over the next 3 years to undertake the REDMAPP study and support her in developing a Clinical Academic Career.
Professor Anne-Sophie Darlington is a Professor of Child and Family Psychological Health within Health Sciences at the University of Southampton. Professor Darlington’s research programme focuses on measuring and improving Quality of Life (QoL) of children and young people with a chronic illness. Her work focuses on coping strategies and developing and testing interventions to support parents and children. She has developed a strong international track record in research on predictors of adjustment (e.g. coping), Patient Reported Outcome Measurement, intervention development and Paediatric Palliative Care, focusing on understanding how parents cope when faced with their child’s imminent death and how we can best support them.
The questions central to her research are:
- How do children with a complex illness and their parents adjust?
- What interventions can be developed and tested to support families and improve their quality of life?
- How can we best measure outcomes, such as quality of life?
She has developed a theoretical framework on parental coping to underpin the work, with clear testable hypotheses driving the research. She is the chair of the European Organisation for Research and Treatment of Cancer Quality of Life Group and has been awarded funding as PI or co-PI, from national (e.g. Brain Tumour Charity; British Renal Society) and international (e.g. European Organisation of Research and Treatment of Cancer (EORTC) competitive funding agencies.
Professor Anne-Sophie Darlington
Professor Faith Gibson
Professor Faith Gibson holds a joint appointment as a Professor of Child Health and Cancer Care at the University of Surrey and Director of Research at Great Ormond Street Hospital (GOSH). Professor Gibson leads the Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID) at GOSH.
Professor Gibson’s research programme aims to improve the experience for children and young people, receiving and post cancer therapies (and family their members). There are five strands to her programme that focuses on understanding and improving: processes and outcomes of care for children/young people with cancer and their families; assessment and management of symptoms and development of clinical guidelines; survivorship care; the skills of the nursing workforce to deliver cancer care; and the experiences of children, young people, and young adults in hospital.
At the core of all of her work is the importance of patient and public involvement (PPI) in research, ethics and the good conduct of research, and using active, engaging multi-level approaches to dissemination that impacts on the care of families. Professor Gibson has been Principal Investigator or named co-investigator on a number of funded studies, which includes 2 NIHR grants. She has published 100+ peer reviewed journal articles, several book chapters, and co-authored 5 text-books. Professor Gibson is a narrative researcher, drawing upon both qualitative and participatory research methods.