Why is this research needed?
Over the last 30 years, children’s and baby’s palliative care services have developed across different settings, including hospitals and children’s hospices, with significant input from third sector organisations. This means that the way these services are run differs considerably from place to place, with a recent review calling the organisation of children’s end of life care services inconsistent and incoherent.
What are the aims of this study?
This part of the ENHANCE study is exploring parents’ and healthcare professionals’ experiences of end-of-life care within different organisations to see if there are common areas of good practice and areas for improvement that could form a model to be consistently applied across all settings.
What are the researchers doing?
To gather a range of experiences, the researchers will carry out interviews with around 40 bereaved parents and focus groups with around 100 healthcare professionals. The questions will explore what currently works well and what makes it more difficult for parents to access and use end of life care services, and for healthcare professionals to provide them. The answers will be analysed to compare the experiences of both groups and find common themes in what currently works well and what aspects need improving.
A Patient and Parent Advisory Group is involved with the research study. They have already reviewed all of the interview questions that will be asked of parents to ensure that they are relevant, suitable and sensitively communicated. They will continue to be involved in the study, providing support to the research team in interpreting and sharing the research findings.
What is the study expected to achieve?
This part of the ENHANCE study aims to identify the factors that make it easy and difficult for parents to access children’s end of life care, and for healthcare professionals to provide high quality end of life care consistently. Part of this also involves identifying whether there are any perceived inequalities in who is able to access high quality children’s end of life care.
Additional information:
Lead researcher – Professor Lorna Fraser
Institution – Martin House Research Centre
Funder – National Institute for Health Research (NIHR)
Duration – 2018 - 2022
