National Institute for Health Research Wellcome Trust Clinical Research Facility, Southampton, UK

Katy jointly coordinates an experienced team of children’s research nurses, aiming to ensure that all children have the opportunity to take part in and enjoy research within the clinical research facility, hospital and wider community.

Katy trained in Southampton and qualified with a first class honours degree in children’s nursing in 2004. She has worked in children’s clinical research since 2010 in a team delivering clinical research in the paediatric intensive care unit, having worked in paediatric cardiology and as a Sister in paediatric intensive care in Southampton and at Evelina Children’s Hospital, St Thomas’ Hospital, London UK.

In 2012, Katy started a two-year part-time Masters in Clinical Research (MRes) at the University of Southampton. Katy’s research is the first study to directly examine the experiences and views of UK HCPs towards transferring critically ill babies and children home to die.

 (1) University Hospital Southampton NHS Foundation Trust, Clinical Research Facility, Southampton, United Kingdom, (2) University of Southampton, Faculty of Health Sciences, Southampton, United Kingdom, (3) University Hospital Southampton NHS Foundation Trust, Paediatric Intensive Care Unit, Southampton, United Kingdom, (4) Victoria University, Graduate School of Nursing, Midwifery and Health, Victoria, New Zealand

Background: Over 65% of paediatric deaths occur within PICUs and NICUs and often follow a decision to limit or withdraw life-sustaining treatment. The literature on transfer home and subsequent withdrawal of life-sustaining treatment is limited to case reports. The aim of this study was to investigate the experiences and views of UK health care professionals (HCPs) towards transferring critically ill babies/children home to die. 

Methods: An online survey was developed drawing on paediatric literature and adapting an existing questionnaire used to explore HCPs views on the transfer of critically ill adults' home at end of life. Over 900 UK NICU and PICU doctors and nurses were invited to take part by email. The survey consisted of questions exploring experience, statements of views (response options rated 1-5; strongly disagree to strongly agree) and ranking barriers to transfer. 

Results: 179 HCPs completed the online survey (response rate 22%). 70% of respondents reported experience of transferring critically ill babies/children home to die in the last 3 years but only 20% had been involved more than once or twice . The majority (73%) of respondents agreed that transferring patients home is a good idea and 24% agreed that it would be unethical to prolong a patient's life to facilitate a transfer. 84% disagreed with it being a waste of health care resources. The most frequently reported barriers were a lack of community access, concern that patients' relatives were unlikely to cope with the transfer or death at home, and staff confidence about the transfer home process. 

Discussion: This study is the first to explore experience and views of UK HCPs about transferring critically ill babies/children home to die. Overall, respondents' views were positive but the experience was limited to one or two patients. Although 80% reported that they could organise a transfer home, one of the major barriers in providing this service was staff confidence and access to community care.