Our research is multi-disciplinary and inter-disciplinary and focuses on understanding and improving the lives of children, young people, pregnant women and families.
We work across various sectors including social care, health and education and we aim to influence practice, policy, and public engagement.
Our work is regional, national and international in its context and reach. We work with colleagues in the UK, the Netherlands, Sweden, Spain, the USA, Canada, Brazil, Jordan, South Africa, Malawi, Indonesia, Cambodia, Korea, Australia and New Zealand. Our Honorary Professors include Professor Art Frank (Canada) and Professor Matthew Peak (UK) and our Honorary Senior Lecturers include Dr Annette Dickinson (New Zealand) and Dr Karen Ford (Tasmania).
Our focus within this domain is about people’s agency and their rights to be involved in choices and decisions about their lives and health and social care. In particular, our research addresses issues related to agency for children, young people and their parents/carers.
Our programmatic national and international work on clinical holding focuses on improving our understanding of why children are held during procedures and what factors influence holding, including children’s assent or dissent. We are examining clinical holding from the perspectives of the children, their parents and the professionals. Our work has culminated in the collaborative development of the ISupport Rights-based standards for children undergoing a clinical procedure which aims to impact practice and improve procedural practice.
Our research encompasses children and young people with acute and chronic conditions, including those with intellectual disabilities, Autistic Spectrum conditions and those requiring in-patient mental healthcare.
We have been involved in work to improve children’s experiences when they come to hospital for procedures and appointments and have developed resources such as Children Coming to Hospital and Coming to Spinal Clinic and informed the development of the Xploro app.
Our focus on agency is evident within the DETECT study where one thread of our work is exploring the factors which promote or inhibit parents’ agency in sharing concerns about their child’ possible deterioration. This is part of a major initiative to implement an electronic handheld device to enhance early detection of deterioration in children’s vital signs.
Our focus within this domain is on the ways in which lives, relationships and identities can be changed by difference and disruption associated with long-term conditions, complex healthcare needs, disability and trauma
Examples of our work include the development of a resource – Telling My Friends – for young people with Crohn’s or colitis to inform and support them about disclosing their diagnosis. Additionally, our work on romantic relationships and young people with long term conditions is being developed with a focus on how chronic pain can challenge self-image and identity and influence romantic relationships for young people.
Our work focusing on young peoples’ experiences, wellbeing and management of long-term conditions and disability includes involvement in the development and evaluation of the Adolescent Diabetes Needs Assessment Tool (ADNAT) and the Stoma Support Study. Jennifer Kuroski’s study examines the lived experiences of aunts and uncles supporting parents of children and young adults with Autistic Spectrum Condition (ASC). In addition, our work focuses on children with ataxia being undertaken by Helen Hartley.
The Parent Champion project (Professor Bernie Carter, Dr Anita Flynn, Dr Jacqueline McKenna), funded by NHSE, is a collaboration between Edge Hill University, Alder Hey Children’s Hospital and the Children’s Centres in Liverpool. It is focusing on the use of Parent Champions to empower parents in their own communities to protect their children from bronchiolitis and to make effective decisions about when to seek help and from which services.
Our focus within this domain is on promoting participation in society with a particular interest in children, pregnant women and young people’s participation in decision-making and in promoting access to services. Our studies encompass young offenders, children with special education needs and disabilities, families who have a child with disability and children with pain. We have also worked with pregnant women and midwives to improve understanding regarding healthy eating and weight management advice offered/received during pregnancy.
We are actively involved in Patient and Public Involvement (PPI) with particular depth of interest in PPI with children, young people and pregnant women.
The key people working in this domain from the Faculty of Health, Social Care and Medicine are Professor Bernie Carter, Professor Lucy Bray, Dr Julie Abayomi, Dr Joann Kiernan, Dr Sean Creaney, Toni Bewley and members of the Service User and Carer Council.
The ‘Fit for Birth’ study (Dr Julie Abayomi) gathered evidence to support guidelines for weight management and healthy eating during pregnancy for pregnant women with a BMI > 35kg/m2. Julie also has funding to conduct research with pregnant women expecting twins, to gather evidence to support guidelines for optimal weight gain and dietary intake for this group (as currently there are none). Miracle Rotimi is researching the diet, physical activity and lived experience of black pregnant women; Katie Cole is evaluating Mamafit (a lifestyle intervention for pregnant and postnatal women) regarding impact on diet, physical activity, weight and mental health.
The CASTLE study focuses on children with rolandic epilepsy and Professor Lucy Bray is leading the family engagement work and Professor Bernie Carter and Dr Holly Saron are leading the qualitative research components.
The Ask, Listen, Act project funded by the NIHR has investigated the impact of the COVID-19 pandemic on children and young people with Special Education Needs and Disabilities (SEND). The project worked with children and young people with SEND, parents and professionals to co-develop policy and practice priorities to mitigate the impact of COVID and develop a meaningful recovery and renewal response.
Key to our work is our commitment to advancing children’s participation in research. We are active in developing and using inclusive, arts- and technology-based approaches to promote the participation of children and young people in a wide range of studies and in using performance-based approaches to dissemination.
We have also developed a resource about the assessment of pain for children with complex healthcare needs called Communicating Lily’s Pain.
Doctoral work by Martina Kennedy focuses on the collaborative development of a communication curriculum for children’s nurses.