Preliminary assessment of The Spectrum confirms its potential to promote consistent data set collection in children's palliative care. The results have been used to produce a revised version and user guidelines to address issues raised by participants. However, further research is required to further validate the framework and establish its relevance to families' self-defined needs.
Managing and sharing research data in children's palliative care: Risks, benefits and imponderables 1 | INTRODUC TI ON Children's palliative care (CPC) is a growing specialist area, focussing on holistic support for children and young people with life-limiting illness. This encompasses symptom control for the child, emotional and psychological support for the child and family and addresses practical, financial and spiritual needs. Support from professionals may be required over an extended period from the time of diagnosis of a life-limiting condition, continuing throughout the child's life and extending to include bereavement support for surviving family members after a child or young person has died.
Doctoral level research can contribute to the evidence base, particularly in under-researched areas and numerically small fields such as children and young people's palliative care. It is acknowledged that much of what we currently do in children's and young people's palliative care is eminence-based, rather than evidence-based (Together for Short Lives, 2018). Whilst sharing experience and wisdom was valuable, particularly when the specialty was in its infancy, it is important now to develop an evidence base to ensure that children, young people and their families receive the highest standard of care. This requires fostering the development of a research culture, including trained clinical and non-clinical researchers, who will pursue a penetrating and rigorous research agenda (Beecham et al., 2016).Research in children's palliative care shares many of the challenges common to any field of inquiry-time, funding, governancebut also some that are unique. It can be a particularly lonely road for doctoral research candidates, who often find themselves without the support of a similarly situated research peer group.
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