Accessibility statement

Our Research

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:-

Research Prioritisation Exercise

Click on the themes below for individual research studies:-

Emotional health and well-being:-

Projects within this theme are concerned with the mental health and emotional well-being of children and young people with life-limiting conditions

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. 

Clinical Care:-

This theme is about the physical health of children with medical complexity or life-limiting conditions, and issues associated with symptom management

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

 

 

Service planning, organisation and delivery:-

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

This study aims to describe current models of care and identify barriers and facilitators to delivering high quality care for patients with medical complexity

This study will explore parental experiences and perspectives of what good palliative care for children and young people looks like and how the guidelines for children’s palliative care in England feature in these experiences. The study will provide important evidence to inform future policy and service developments in children’s palliative care

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.

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 project will develop a Patient-Reported Experience Measure (PREM) for use in children’s palliative care settings.

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.

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.

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 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 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 study is looking into families contacts with GP, the factors affecting patterns of use, and whether it affects use of emergency healthcare services

Parents and families:-

Studies within this theme focus on understanding and meeting the needs of parents, siblings and other family members

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.

This a PhD studentship which is looking into the experiences from a fathers perspective of having a child with a life limiting condition.

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 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 aims to identify and synthesis existing evidence to deepen understanding of both parent and child experiences of the end of life care for children

Bereavement:-

Our projects on bereavement are looking at parents' needs and experiences, and the role of services in supporting families during this time

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 study identified and collated existing evidence on impacts and effectiveness of bereavement support interventions for the parents.

  • Bereavement support and the use of ‘cooling facilities’ by children’s hospices: an international study

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.

Workforce:-

This theme concerns the challenges or issues faced by staff working in paediatric palliative care settings

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.