Providing optimal medication to children dying at home, version 1.0

  • Research type

    Research Study

  • Full title

    Multidisciplinary healthcare professional perspectives on the effective provision of medication for symptom control to children and young people dying at home.

  • IRAS ID

    259392

  • Contact name

    Sarah Anne Parker

  • Contact email

    TadmanSA@cardiff.ac.uk

  • Sponsor organisation

    Cardiff University

  • Clinicaltrials.gov Identifier

    not applicable, not applicable

  • Duration of Study in the UK

    0 years, 9 months, 31 days

  • Research summary

    National UK guidance (National Institute for Health and Care Excellence NG61 published 2016) advocates end of life care in families’ preferred location, but there is little evidence base around the pragmatic issues of medication provision for children dying at home. Providing care to dying children at home is a challenging clinical role often undertaken in rural areas by general paediatric professionals (i.e. paediatricians and community nurses) with specialist palliative care teams located remotely. This is significantly different to adult palliative care, where much direct care is provided by GP and district nurses.

    A qualitative study, analysing individual interviews with NHS healthcare professionals, has been chosen to gain breadth and depth of data on the topic. It reflects the clinical complexity of providing end of life care and the many influencing factors on medication provision. A literature and policy review is integral to this research and will inform the interview schedule and analysis framework developed. Paediatricians with an interest in palliative care, children’s community nurses, oncology outreach nurses and paediatric pharmacists will be invited to participate as these groups have the most frequent and direct roles in medication provision for children dying at home in North Wales. Each participant will contribute one interview to the study.

    This unfunded study is undertaken for a Master's degree in Palliative Medicine. It aims to establish a comprehensive and pragmatic understanding of the challenges and opportunities for healthcare professionals in providing optimal medication to children dying at home. The findings will benefit future patient care in North Wales by allowing sharing of existing good practice among professionals, and create opportunities to inform and influence future policy, service development and quality improvement activity. Findings would also be applicable to other UK areas where specialist paediatric palliative care teams are located at some distance.

  • REC name

    N/A

  • REC reference

    N/A