Within the UK, there has been an increased clinical focus on neonatal palliative care since the publication of the Nuffield Council on Bioethics Working Group Report, Critical Care Decisions in Fetal and Neonatal Medicine (2006). A range of different UK guidelines about neonatal palliative care are actually in place; however, there is inconsistency in how babies receiving palliative care are identified, which families receive it and to what extent it differs from routine care. Soni et al. (2011) surveyed 29 neonatal services and found local guidelines in only 24%, and only 2 units had a dedicated palliative care team. Research into medication use in UK neonatal palliative care units found that of the 94% of tertiary level units who replied, only two (4%) had written guidelines for their use (Chaudhary et al. 2012).
In addition to varied clinical practice, there are variable recommendations for provision of parental support following a decision to limit life-sustaining treatment, which may include many different aspects of emotional and practical support. Parents throughout the country are receiving different levels of support, resulting in an inequity of service provision for all.
We propose to develop a COS which will allow neonatal practitioners I high and middle income countries to determine standards of neonatal palliative care, and use standardised outcome measures to compare clinical practice between different neonatal units. In doing so, we hope to improve the experiences of infants, families and practitioners in this emotionally challenging area.
Prof Neil Marlow, UCL EGA Institute for Women's Health
Alex Mancini, Chelsea & Westminster Foundation Trust & The True Colours Trust
Dr Katie Gallagher, Senior Research Fellow, UCL EGA Institute for Women's Health
Disease Category: Neonatal care
Disease Name: Palliative care
Age Range: 0
Sex: Either
Nature of Intervention: Palliative
- Charities
- Clinical experts
- Ethicists
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service commissioners
- Service providers
- Service users
- Statisticians
- COS for clinical trials or clinical research
- COS for practice
- Recommendations for outcome measures (measurement/how)
- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Systematic review
We will build a study team reflecting the stakeholders in the project. We will then undertake interviews with relevant user groups to compliment the SR of outcome measures already in use. Following this, we will conduct an international Delphi process (including all relevant stakeholder groups), predicting 3 rounds before consensus. We will then hold a consensus meeting (with options to participate online / in person) to determine the final outcomes in the COS. Consideration will be given to how and when the outcomes can be measured.