I am interested in the impact of disability and chronic illness on families and how support can be developed to meet their needs. My main research interests relate to the experiences and support needs of children/young people with long-term/life-limiting conditions and their families. Issues examined include service organisation and transition to adult services and adulthood; the lived experience of children, young people and parents; relationships between families and services and within the family; self-management and self-care.
In addition to work focusing on children, young people and families my research interests extend to adult long term conditions and the role played by health technologies and families in self-care support. I am currently working with the NIHR Greater Manchester Patient Safety Translational Research Centre on safety and marginalised groups.
Current/Recent Research Projects
Developing A Model For High Quality Service Design For Children And Young People With Common Mental Health Problems (NIHR HS&DR)
Understanding Fatigue in Children and Young People with Sickle Cell Disease to Guide the Co-Development of a Fatigue Self-Management Intervention (NIHR RfPB)
Investigating the wellbeing and support needs of adult siblings of children and young people with life-limiting conditions
Designing a Responsive and Integrative Model of Respite Care for Families of Children with Complex Care Needs and Conditions (CCNC) through Patient-Oriented Research (CIHR)
Non-suicidal self-injury among youth: Perspectives of youth who self-harm, their families and service providers (CIHR)
Making Visible the Life Stories of Families of Children who are Immunocompromised during COVID-19 (CIHR)
Older adults’ experiences of living with cystic fibrosis: a qualitative study
Family Focussed Care Across the Lifecourse
Advancing patient engagement in global child health care and research: A systematic review
Building resilience to improve the life course and prevent future impact of skin conditions on young people (BRISC): a feasibility study (NIHR RfPB)
A Rapid Evidence synthesis of Outcomes and Care Utilisation following self-care support for children and adolescents with long term conditions (NIHR HS&DR)
Childhood Multiple Sclerosis: Families’ Experiences and Support Needs (MS Society)
A study to explore parents’ perceptions of their needs during the acute stage of severe traumatic brain injury in childhood
Identifying carers of patients with vascular disease Investigators (NIHR)
Voluntary Organisations Community Groups And Local Networks of Support (VOCALS): A qualitative study of community networks of health (NIHR).
Children’s Hospices and the Support of Young Adults with Life Limiting Conditions
Identifying and evaluating mental health self-are support for children and young people (NIHR)
Transfer from paediatrics to adult care: Perspectives of young people with cystic fibrosis.
Evaluating self-care support for children and young people with long term conditions. (NIHR)
An Investigation of Children’s and Parent’s Experiences of Hospice Support.
Moving Care Closer to Home: An Evaluation of the Costs and Effects of Different Models of Caring for Acutely ill Children at Home. (DH Policy Programme)
Current/Recent PhD Students
Mary Longworth: An ethnographic study of Father’s involvement during labour.
Salha Al-Bloushi: The experience of being the mother of a child with cerbral palsy in Oman: Exploring their experiences and support needs.
Gillian Waring: Families experiences of living with childhood chronic cough.
Brenda Poku: Exploring how adolescents with sickle cell disease experience and self-manage fatigue.
Ruth Nightingale: Supporting 13-18 year olds to become independent at managing their CKD: Development and initial testing of a young person-led self-management action plan
Anna Wawera: Childhood long-term conditions and patient safety
Google Scholar page: http://tinyurl.com/zlylkax