Archives of disease in childhood
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Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for paediatricians, families and their multidisciplinary teams to consider, reflect and record the outcome of their conversations about what might happen in the future in order to optimise quality of clinical care and inform decision-making. ⋯ This may be unexpected and sudden, in the context of an otherwise active management plan or may be expected and necessitate discussions about the process of dying and attention to symptoms. Decision-making about appropriate levels of intervention must take place within a legal and ethical framework, recognising that the UK Equality Act (2010) protects the rights of disabled children and young people and infants and children of all ages to the same high quality healthcare as anyone else.
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This review seeks to explore and explain what health policy research is and why it matters, through pooling the evidence and providing case examples. Alongside examining the types of research involved, and their rationale the paper identifies the challenges taking part in this sort of research may create. Finally the paper suggests how to make clinical research more accessible to policy makers.