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.

• A comparative analysis of psychological health status and risk factors among 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. 

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.

• 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

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. 

• 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

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

• 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.

• 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.

• 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.

• 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.

• 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.

• 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.

• 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.

• End of Life Care (EoL) for Infants, Children and Young People: a mixed methods evaluation of current practice in England and Wales (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.

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.

• 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.

• 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. 

• 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.

• 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.

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.

• 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.

• 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 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.

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.  

• 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