Our Research

• Anxiety and Depression among Children, Adolescents, and Young Adults 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. 

• Trends in the Prevalence and Complexity of Children with a Life-limiting or Life-threatening condition in Wales

This study aims to estimate the number of children living with a life-limiting condition in Wales and to examine the complexity of the children’s condition. This will aid future design of services for children and their families.

• Yourtube: The role of different diets in children who are gastrostomy fed

This ongoing study is comparing two different diets (formula and home-blended food) for children and young people with a gastrostomy (feeding tube).

• Managing multiple medications for children and young people with life-limiting conditions

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.

• Scoping social care and support priorities for young adults with neuromuscular conditions

This co-produced project aims to identify priorities for social care and support for young adults with neuromuscular conditions, taking forward one priority to develop into a research study to form part of an NIHR advanced fellowship application.

• Models of Care for Children with Medical Complexity

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

• Learning from parents’ experiences of palliative care for their child

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

• End of Life Care (EoL) for Infants, Children and Young People: a mixed methods evaluation of current practice in the United Kingdom (ENHANCE)

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.

• Life, Loss and Lullabies’ Evaluating the role of Music Therapy in Paediatric Palliative Care

This study aims to explore experiences of music therapy in children's palliative care,  develop evidence about potential benefits and increase understanding about how music therapy should be delivered for children with life-limiting conditions 

• 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.

• Developing a Patient-Reported Experience Measure for use in children's palliative care setting

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

• Evaluation of the Young Adults Project

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.

• Place of Death

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.

• Implementation of a Managed Clinical Network for Children’s Palliative Care – a Qualitative Evaluation

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.

• Transitioning from paediatric to adult healthcare with a life limiting condition; does this lead to increased healthcare usage, cost and worse patient outcomes?

• Make Every Child Count

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.

• Specialist Paediatric Palliative Care for Children and Young People with Malignancies – A Mixed Methods Systematic Review and Stakeholder Consultation

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.

• GP involvement in the care of children and young people with life-limiting conditions

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

• Understanding the impacts of Covid-19 for children and young people with life-limiting conditions – a parent survey

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.

• The experiences of fathers of children with a life limiting condition

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

• Crisis prevention rather than crisis management: the health of mothers of children 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. 

• Exploring psychosocial support for siblings of children with life-limiting conditions

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.

• Understanding child and parent experiences of end-of-life care of children: a systematic review and qualitative synthesis

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

• The Early Days Project: parents’ experiences of the early days of bereavement and the support they receive from children’s hospices

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.

• Bereavement support for parents of a child who has died: A systematic review

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.

• SWiCH (Staff Wellbeing in Children's Hospices)

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.