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Research project: Resilience, capacity and coping: An investigation of the practical and emotional work parents undertake as they care for a child with cancer at the end of life

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Recent decades have seen a huge improvement in medical care for children with potentially life threatening illnesses. Survival rates of children with cancer, for instance, have improved dramatically but 25 to 30% of children with cancer still die. Self-management and capacity of parents to undertake the work associated with caring in the face of intense psychological distress become paramount in the palliative phase. Until recently there has been little research into experiences of children and parents during the palliative phase of illness.

The aim of this study is to investigate the burden and workload of caring for a child at the end of life. By assessing the practical and emotional work that parents do, their capacity to cope with that work, and the perspective of the health care professionals supporting those families, we will in future develop two assessment tools which can be used by nurses to tailor support services to family’s changing needs.

Funder

Annual Adventures in Research

Themes

  • Paediatric Palliative Care
  • Parental coping
  • Life-limiting illness

 

 

 

Related research groups

Complex Healthcare Processes
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