Our research is organised under six themes. Within these themes are studies using a wide range of study designs and methods including: systematic reviews, qualitative research, secondary data analysis, surveys and observational studies. Many studies are mixed methods. Overall, our research spans the entire period of childhood and into young adulthood. All our work is applied research, concerning issues relevant or related to health and care policy, service organisation and delivery and practice.
Identification of the Centre’s Research Priorities
One of the Centre’s first pieces of work was a project to identify research priorities:-
The research themes are:-
Projects within this theme are concerned with the mental health and emotional well-being of children and young people with life-limiting conditions
There are a number of reasons why having a life-limiting condition may affect a child or young person’s mental health or emotional well-being. For a number of our projects children/young people’s emotional well-being is among a number of outcomes we are investigating. In addition, one of our PhD students is specifically focusing on this issue.
This study is using existing and routinely collected data to investigate what factors may increase the risk of children and young people with life-limiting conditions experiencing mental health difficulties.
This theme is about the physical health of children with medical complexity or life-limiting considtion, and issues associated with symptom management
Children and young people with medically complex or life-limiting conditions typically have a number of issues with their health which require careful management to ensure they are as healthy and comfortable as possible. Studies within this theme are interventions implemented and managed by the clinical team.
This ongoing study is comparing two different diets (formula and home-blended food) for children and young people with a gastrostomy (feeding tube).
This is an exploratory study looking at existing evidence on whether further research is needed into how to best manage the care of children who are receiving many different types of medicine
Whilst looking at a wide range of different types of service or groups of children, projects within this theme are all about the organisation and delivery of care
The way services are organised and delivered, including access to services which are needed, can significantly affect the quality of care and the extent to which children and young people’s needs are met. Studies within this theme range from work on primary care through to specialist palliative care, and also include work on transition between services.
This study is looking into families contacts with GP, the factors affecting patterns of use, and whether it affects use of emergency healthcare services
This study looked at existing evidence on the impact of involving specialist palliative care doctors, or teams, on the quality of care of children who die from cancer and the factors which support, or act as barriers, to ensuring palliative care needs are met.
This project will provide evidence on the number of children (0-18 years) in the UK with life-limiting conditions and will support more accurate predicting of demand for care and support.
This study aims to assess the trends in place of death for children who died with a life-limiting condition in England and the clinical and demographic factors which are associated with death in the community (home or hospice) rather than hospital.
This study is evaluating an initiative between Martin House and St Leonard’s Hospice which is seeking to support the development of life skills for young adulthood and the transition to adult hospice care.
NHS England selected Yorkshire and the Humber as the pilot area to implement a managed clinical network for children’s palliative care. The Martin House Research Centre team carried out a qualitative study to identify the barriers and enablers of successful implementation.
This project will develop a Patient-Reported Experience Measure (PREM) for use in children’s palliative care settings.
Supporting the complete care of children and young people with life-threatening or life-shortening conditions, and their families: a mixed-method study of pastoral, spiritual and religious needs and support, and the role of chaplaincy service
This study is gathering evidence the NHS and children's hospices can use to guide how they meet the pastoral, spiritual and religious needs of children and young people living with a life-threatening or life-shortening condition, and their families.
This study will increase understanding about the different ways in which end of life care is provided for children and young people, and examine how these different models of providing end of life care impact on children and their families.
Studies within this theme focus on understanding and meeting the needs of parents, siblings and other family members
The studies within this theme concern parents and other family members. They include work on emotional and physical well-being, and the experiences of having a child with medical complexity or a life-limiting condition. Work on bereavement is a separate research theme.
This project is looking at what we can learn from evidence on psychosocial support for siblings before moving on to do primary research looking at siblings needs and experiences.
This project is using a number of different methods to describe the health of mothers of children with a life-limiting condition before moving on to carry out the first stages of an evaluation of preventive health intervention.
This a PhD studentship which is looking into the experiences from a fathers perspective of having a child with a life limiting condition.
This online parent survey is investigating the experiences, information and support needs and decision-making for children and young people with a life-limiting condition in response to the Coronavirus pandemic.
Our projects on bereavement are looking at parents' needs and experiences, and the role of services in supporting families during this time
Work under this theme concerns the experience of bereavement and care and support needed and provided to bereaved parents, both prior to and after the death of their child.
This study identified and collated existing evidence on impacts and effectiveness of bereavement support interventions for the parents.
This study specifically focuses on bereaved parents’ experiences of spending an extended period of time with their child, and the ways that children’s hospices support this; particularly, the use of cooling technologies to prevent deterioration.
This piece of work replicates the survey of UK children’s hospices carried out for the Early Days Project, this time mapping bereavement support and the use of ‘cooling facilities’ by children's hospices across Europe and further afield. This project is being conducted in partnership with the European Association of Palliative Care.
This theme concerns the challenges or issues faced by staff working in paediatric palliative care settings
The focus of this theme is the implications of working in settings where children and young people are at end of life or receiving palliative care in terms of implications for, and impacts on, the staff involved.
This study is investigating the work-related stressors and rewards associated with working in a children hospice, and the factors which affect the impacts of this sort of work on staff well-being