Together for Short Lives Research Strategy 2015-18
Introduction
The purpose of this strategy is to set out our vision, objectives and activity in relation to research and broader enquiry. As well as wanting to
play a leading role in fostering a culture in which academic research flourishes, we also want to play a leading role ourselves in providing stories
about child and family experiences and ensuring that children and young people with life-limiting and life-threatening conditions and their families
are able to take part in research and contribute their voices to increase the evidence base.
This document sets out in more detail how we will adopt an approach of enquiry to underpin all strategic areas of our work over the next three
years both in our work internally and in our work externally with members and the wider academic world.
In developing this strategy we have reflected on the findings of the research report developed by the Commission into the Future of Hospice
Care1 and believe that many of the recommendations of this report are equally relevant to the children’s hospice and palliative care sector. In
particular we support the proposal of developing a 3-tier research framework for encouraging the development of children’s palliative care services
that are research aware, research active and research leaders.
We believe that this strategy is critical to the future development and success of children’s palliative care services. The need for evidence to
demonstrate the value, impact and cost-effectiveness of children’s palliative care provision is ever stronger in the new competitive economic
climate. It is also critical that services understand the communities that they serve and adapt to changing demographics. A key priority area will
be to support the development of an outcomes framework that can be used by children’s palliative care services to demonstrate their impact on
the lives of children and families.
In developing this research strategy we plan to consult with the joint Together for Short Lives/APPM Research Group, the members of which
will play a key role in supporting our ambitions for research and enquiry.
1
Payne S et al (October 2013). Research in palliative care: can hospices afford not to be involved? A report for the Commission into the Future of Hospice Care.
Overall Objectives
1. To address barriers to carrying out research in children’s palliative care.
2. To foster and encourage a research culture in the children’s palliative care sector, using the 3 tier research framework.
3. To share and translate research findings so that they can be embedded across the organisation and used externally to inform practice
and service development.
4. To play an expert role in sharing stories and experiences from children and young people with life-limiting and life-threatening conditions
and their families.
5. To support the development of an outcomes framework for children and young people with life-limiting or life-threatening conditions.
How does it fit with the Together for Short Lives overall strategy?
We have identified enquiry as one of the three key approaches or ‘hows’ that thread through our 2015-18 strategic plan.
We will lead enquiry
We will gather evidence and stories so that the needs of children and families are better
understood. We will help those working in children’s palliative care to understand and use
evidence and undertake their own enquiry to support the development of services.
This strategy sets out how enquiry will be used to inform our broader strategic priorities and strengthen our role in building a culture where
research is understood and used to inform practice and service development.
This research strategy should be read in conjunction with our plans that relate to data as this is a linked strand of our research activity that aims
to build a better understanding of the numbers and needs of children who need palliative care.
Progress to Date
ACT and Children’s Hospices UK had recognised the need to develop a joined-up approach to raising the profile of research in children’s
palliative care and supporting the development of a research culture and more robust evidence base. The organisations lobbied for funding for
a Chair in Children’s Palliative Care. The subsequent appointment of the UK’s first Chair in Children’s Palliative Care in 2010, funded by the
True Colours Trust, was a massive boost for the children’s palliative care sector and an opportunity to really progress the research agenda in a
small, but growing, area of care.
Prior to the merger of ACT and Children’s Hospices UK there had been a number of research initiatives, including two major studies funded by
the Big Lottery Fund (the BIG Study and the STEPP project) and a small research grant programme that had been established by Children’s
Hospices UK with the proceeds of a legacy. This programme funded a study by Dr Lorna Fraser into the prevalence of life-limiting and lifethreatening conditions, research by Dr Richard Hain into the development of a directory of conditions and the Bridging the Gap study recently
published by Bangor University.
Following the merger of the two organisations to form Together for Short Lives there was a huge opportunity to make a concerted effort to
advance the evidence base for children’s palliative care. In addition, members of the Association of Paediatric Palliative Medicine, as leading
clinicians in the field, had long been involved in a variety of research projects and were publishing research within medical and other clinical
journals.
It was agreed that a Joint Research Group would really make the most of this opportunity to bring together researchers both from the medical
and the wider sector to focus on improving the evidence base for children’s palliative care and improving understanding of the needs of
children, young people with life-limiting conditions and their families.
The joint Research Group has been established for over two years and plays a critical role in providing advice and guidance to both Together
for Short Lives and the APPM. The Research Group establishes time-limited Taskforces to undertake work on particular areas and currently
has Taskforces looking at Outcomes, Publications, Data and Research Ethics.
Success measures:
As described in our Strategic Plan, our overall approach to enquiry will mean that:




There is a stronger emphasis and capacity for enquiry within local services
Providers and professionals better understand the local needs of children and families.
Examples of good practice and innovation are identified.
We have evidence from children, young people and families to substantiate our work to influence professionals, providers, commissioners
and governments.
Delivery of our five key objectives within this research strategy will mean that:
Objective 1: To address barriers to carrying out research in children’s palliative care.
 There is clear evidence that our input has helped to break down the barriers to carrying out research in children’s palliative care.
 The priorities of children with life-limiting conditions and their families will be at the centre of research endeavours.
Objective 2: To foster and encourage a research culture in the children’s palliative care sector, using the 3 tier research framework.
 Children’s palliative care services are more aware of published research, how to find it and apply it to their work.
 Children’s palliative care services take part in research led by academic centres and enable families to be involved. Children’s palliative care
services bridge the interface between research and practice through carrying out high quality evaluation and audit.
 Children’s palliative care clinicians and academics lead their own high quality research in key priority areas.
Objective 3: To share and translate research findings so that they can be embedded across the organisation and used externally to
inform practice and service development.
 Together for Short Lives staff and trustees have a clear understanding of new research and what it means in their role.
 Children’s palliative care services are aware of how to access research and apply it to their practice or service development.
Objective 4: To play an expert role in sharing stories and experiences from children and young people with life-limiting and lifethreatening conditions and their families.
 Together for Short Lives showcase the real experiences of children, young people and families in a variety of key platforms.
Objective 5: To support the development of an outcomes framework for children and young people with life-limiting and lifethreatening conditions

Children’s palliative care services are aware of and contributing to the work of the Cicely Saunders Institute in developing an outcomes
framework for children with life-limiting conditions.
3 Year Operational Plan
Objective
1. To address
barriers to
carrying out
research in
children’s
palliative care.
Activity in Year 1
Activity in Year 2
Activity in Year 3
i)
As per Year 1
As per Year 1
ii)
iii)
iv)
2. To foster and
i)
encourage a
research culture
in the children’s
palliative care
sector, using
Work with the Chair in CPC
and the Research Group to
influence government and
other national organisations to
prioritise CPC as a funding
stream in major national
research programmes.
Respond to consultations from
research bodies to ensure that
children’s palliative care
research is prioritised and that
research ethics committees do
not prevent CYP and families
from being involved in
research.
Seek the views of CYP and
families about their priorities for
research.
Engage in 1-2 external
research projects per year that
meet our 7 strategic priority
areas, ensuring that the voices
of CYP & families are included.
Work with other national bodies i)
to implement the 3 tier
research framework within
children’s palliative care,
developing a model for how
ii)
this will look in the cpc sector
Continue to rollout
the 3 tier research
framework model
developed in Year 1.
Encourage cpc
providers to share
As per year 2
Resources
needed
Consultancy to
support the
development
of the 3 tier
model and to
the 3 tier
research
framework.
ii)
iii)
iv)
3. To share and
translate
research
findings so that
they can be
embedded
across the
organisation
and used
externally to
inform practice
and service
development.
i)
4. To play an
expert role in
sharing stories
i)
ii)
iii)
and mapping where services
are on the Framework.
Map research networks and
ensure that children’s palliative
care is represented within
these.
Encourage children’s palliative
care providers to share
research and good practice in
Relay magazine.
Support the development of
‘rising stars’ in research,
supporting new PhDs in
children’s palliative care
working through a new
Taskforce of the joint Research
Group.
iii)
iv)
research and good
practice in Relay.
Hold a masterclass
to support cpc
services to become
research active and
research leaders.
Continue to support
‘rising stars’ in
research and those
carrying out PhDs.
Produce synopsis twice a year
so that published research can
be easily accessed.
Provide briefings on 3-6 key
research studies per year.
To hold conferences to enable
research and good practice to
be shared.
As per year 1
Work with academic partners
(eg Cochrane, James Lind
Alliance) to input feedback
i)
lead the
masterclasses.
As per year 1
Possible
purchase of
upgraded
Endnote
packages.
Conference
costs.
Publish family
stories in engaging
formats.
As per year 2.
Design & print
costs/ digital
media costs to
and
experiences
from children
and young
people with lifelimiting and lifethreatening
conditions and
their families.
5. To support the
development of
an outcomes
framework for
children and
young people
with life-limiting
or lifethreatening
conditions.
ii)
iii)
i)
ii)
from our family community
about their priorities for
research.
Work with other charities to
maximise opportunities to
share family stories in
engaging formats and
platforms.
Through our family story bank,
enable families to share their
experiences and develop
mechanism to analyse these
by specific themes.
Publish the report from the
Outcomes Taskforce to set out
the priority areas for outcome
measure development.
Provide input (drawing on the
findings of i) above) to the
Cicely Saunders Institute to
support their bid for funding to
develop a children’s version of
the palliative outcome scale.
enable sharing
of family
stories.
Database to
store stories?
Thematic
review of
family stories?
i)
Support the
development of a
children’s POS as
appropriate
providing input from
families and
communications
with the cpc sector
as a whole.
i)
Continue to support the
development (&
potentially rollout) of the
children’s POS as
appropriate.
Small amount
of design for
Outcomes
Taskforce
report