Helen Finlinson is the Young Adult Care and Transition Lead for St Elizabeth Hospice and chair of the East of England Regional Action Group for Transition (Together for Short Lives). She recently completed her Masters of Arts in Leadership and Innovation, where she chose to complete her dissertation on ‘An exploration of adult hospices as a provider of short breaks for young adults with palliative care needs.’ The research used an integrative literature review to explore the challenging question of unmet short break needs within an increasing population of young adults living longer with complex palliative care conditions. She writes:
St Elizabeth Hospice in Suffolk, England is an adult hospice with an ambition to develop a regional hub and spoke model of young adult hospice care. The need for short breaks is consistently presented to our service by young adults and their families transitioning into our care. Short break provision is seen as integral to children’s palliative care but historically has not formed part of the adult hospice model.
Many young adults and their families who are transitioning into adult hospices express significant concern and anxiety about losing this vital support with many describing children’s hospice short break services as their “life line”.
St Elizabeth Hospice has a progressive approach to improving transition and hospice care for young adults who are living longer and needing our care. With significant service development over the past three years we are now seeing more successful transitions from the local children’s hospice to St Elizabeth Hospice and have become very aware that there is little or no short break provision for young adults either equipped to meet their complex needs or age appropriate. We are seeing the detrimental effect of the lack of short breaks in adult services for this population of young people.
Regional approach needed
Young adults with complex palliative needs are a relatively small population, therefore it is indicated that a regional approach to provision is needed for services such as short breaks (Together for Short Lives, 2015). The huge resources and skills needed for local short break services is too great for everyone to embark on this challenge individually which is why St Elizabeth Hospice has an ambition to work in partnership with others to host and deliver a regional short break service for young adults with complex palliative care needs across East Anglia.
We are working to connect with others within the East of England Managed Clinical Network, and Transition Taskforce UK (Together for short lives) as well as tackling the funding of this ambition through innovative approaches.
Many will be asking if short breaks is core business for adult hospices? Why the hospice sector? What are the benefits and outcomes of such a service?
The need for persuasive evidence for funding and support is critical. Research and policy development has enabled a robust evidence base to support short break provision for children and older adults with palliative care needs, however there is a paucity of evidence specific to short break provision for young adults with palliative care needs.
Integrative literature review
This integrative literature review was carried out to explore the evidence base for adults hospices such as St Elizabeth Hospice providing short breaks for young adults. The findings provide an undeniable case for the needs of parents for short breaks, and a compelling case for primary research into the needs and wishes of young adults surrounding short breaks. Despite the scarcity of data and weaknesses of some of the papers, consistent conclusions were drawn to indicate that short breaks are likely to be needed for a growing population of young adults with palliative care needs and arguably the duty of adult hospices to consider.
Following critical appraisal the findings were compared and contrasted to identify three emerging themes. Firstly there is a lack of age appropriate short break provision for young adults with palliative care needs. Secondly, the needs of parents for respite is compelling. Thirdly the hospice as a provider for short breaks was identified as an appropriate setting and able to meet the complex medical needs largely unable to be met by other statutory providers. The review presents the legacy of successful children’s hospice short break provision and the potential inheritance for adult hospices to continue this support.
The findings have enabled St Elizabeth Hospice to recognise the needs and ethical premise for this new service provision. It has also highlighted the paucity in evidence available due to lack of service provision to evaluate, indicating the need for further primary research of any such service developed, potentially as a prototype for other services.
A full report on the findings of this research will be published in due course.
For further information on please contact Helen at helen.finlinson@stelizabethhospice.org.uk
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