Long Term Conditions or Life Limiting Illnesses

The Martin House Research Centre is a partnership between Martin House Children’s Hospice, the University of York (Department of Health Sciences and the Social Policy Research Unit) and the University of Leeds.

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Lorna Fraser has been awarded a three-year postdoctoral fellowship from the NIHR, for a project entitled “Children and Young People with Life-Limiting Conditions and Hospital Admissions to Paediatric Intensive Care Units in England: the Development of a Clinical Scoring System”.

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Lorna Fraser has been awarded a five-year career development fellowship from the NIHR, for a project entitled 'Crisis prevention rather than crisis management: the health of mothers of children with a life-limiting condition'

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This project aims to identify the risks, benefits and resource implications for using home-blended food for children with gastrostomy tubes compared to currently recommended formula feeds.

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There are growing numbers of children with medical conditions that will shorten their lives (Life-Limiting Conditions (LLC)). These children have very high health care needs but little is known about the impact of having a child with a LLC on a parent’s own health particularly their mental health.

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This study aims to update and improve national estimates of prevalence of children and young people with a life limiting condition (LLC) in the UK and predict their future prevalence (2017-2030)

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We are embarking on a multi-sited ethnographic study of the policies and practices surrounding the treatment and ‘prevention’ of sickle cell and thalassaemia within an Indian context.  Our main aim is to analyse how these relate to the experiences of people affected by these disorders in the rural, poor and ethnically marginalised, ‘tribal’ communities in India.  Our main objective is to engage with the local communities to make recommendations for policy and practice that will address some of the complex social and ethical issues raised by a focus on ‘prevention’ of recessive gene disorders, within broader debates on genomics and global heath inequalities at an intersection with race, ethnicity, caste, tribe, gender and disability.

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Unhealthy behaviours, such as overeating are associated with increased risk for developing cancer. The aim for this project is to examine the effect of positive affect, episodic future thinking, and their interaction on temporal discounting (TD), food demand, and food choice. A greater understanding of how positive affect and future rewards influence food decisions will help improve other types of healthy decision-making to prevent cancer.

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The aim of this research is to explore the palliative care needs of adult patients and their informal carers living with MND, or bereaved carers of people with MND through a systematic review of qualitative research.

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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.

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This study, led by Dr Julia Hacket, has been funded by Marie Curie to develop a service intervention to help the delivery of 24/7 paediatric end of life care in the North East and Yorkshire region.   The study will assess parent and professional experiences and needs, and patterns of care across the region and will examine outcomes in other regions where interventions have been developed.

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