Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study
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Published on: June 6, 2020
Jo Frost1,2, Jane Hunt3, Jaqui Hewitt-Taylor3
1Bournemouth University/Children's Hospice South West, UK.
Insights
Children's palliative care services show significant variation and inequity across the UK. A new classification system highlights the need for integrated, networked approaches to improve care for children with life-limiting conditions.
Area of Science:
- Paediatric Palliative Medicine
- Hospice Care
- Healthcare Services Research
Background:
- Global development of children's palliative care has led to diverse hospice models.
- Significant inequities exist in service provision within and between countries.
- Existing models of care present challenges for integrating specialist children's palliative care.
Purpose of the Study:
- To classify and describe current paediatric palliative medicine approaches in UK children's and young adults' hospices.
- To identify variations and inequities in specialist training and consultant involvement.
- To inform strategies for improving equitable access to paediatric palliative care.
Main Methods:
- A mixed-methods study utilizing telephone interviews.
- Involved 31 leaders from 28 UK children's and young adults' hospice organizations (66% of all UK services).
- Developed a geographic-specialist classification system based on integrated findings.
Main Results:
- A geographic-specialist classification (Regional specialist, Regional non-specialist, Local specialist, Local non-specialist) was developed.
- Significant diversity and inequity in paediatric palliative medicine provision were identified.
- Only 27.5% of doctors had specialist training, and 67.9% of hospices lacked paediatric palliative medicine consultant involvement.
Conclusions:
- The geographic-specialist classification can guide recommendations for networked paediatric palliative medicine.
- Integrated specialist children's palliative care models can benefit diverse international contexts.
- Promoting equity for children with life-limiting conditions requires addressing current service disparities.
Background:
Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally.
Aim:
To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK.
Design:
A mixed methods study conducted by telephone interview.
Setting/Participants:
Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations.
Results:
A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant.
Conclusions:
Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions.
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