Dr Mhoira Leng Prof Scott MurrayDr Liz GrantDr Scott LongDr Elizabeth NamukwayaDr Julia Downing Dr Joanna Dunn
Building Research Collaboration
‘Living and dying well’
Palliative Care Unit■ Vision
■ advocacy ■ clinical support■ education and training■ research■ centre of excellence
Programme Aim
To support the development, delivery and evaluation of a new integrated model of “generalist” palliative care for sub-Saharan Africa which provides an integrated framework for a continuum of care between a national referral hospital setting hospital and the broad national and international (eg Sudan) community it serves.
3 strands; one overall vision■ To support, develop, deliver and evaluate
palliative care in a hospital setting and ensure its integration into the community
Relevance: ■ For Uganda■ For Sub Saharan Africa ■ For South-North sharing
Collaboration portfolio
Patient needs and perspectivesListening and hearing■ describing different illness trajectories ■ cultural expectations / attitudes towards end of life ■ social, psychological and spiritual needs . ■ decision making and the choice of place of care and
death Relevance■ underpin a palliative care approach■ profile the nature of end stage chronic disease ■ understanding context and cultural and traditional
perspectives
Staff needs and perspectives■ What are the knowledge, skills and confidence gaps in
delivering palliative care?■ What are the challenges and strengths?
■ systems / cultural / traditional / beliefs
Relevance■ establish educational need ■ deliver and evaluate a multi-disciplinary, multi dimensional
training programme■ identify and address system and resource challenges and
build on strengths ■ evaluate clinical interventions■ mutual learning across the collaboration
Frameworks for a continuum of care: a pathways response■ How are patients with palliative care needs
identified ?■ How is palliative care provided?■ What are the barriers and blocks to delivering
quality and continuity of care? ■ What, and who influences the decision making
process? Relevance■ Develop an holistic and continuous model of care
for life limiting illness
Summary Research is a priority – (90/10 divide)
Facilitates Advocacy at national level Encourages Donor interest Creates momentumGives direction and encourages national ownership Increases staff motivation and local engagement Builds staff capacity - transferable skills
What can we do
Work with colleagues to identify local capacity, identify partners, create structured collaboration, ( THET manual)
Provide succinct summaries of global initiatives / new research/ - help to translate knowledge into practice, echoing questions that are being asked
Provide research training events Information about grants – connecting to global programmes Turn research into papers, turn research into practice, turn
practice into policy, turn policy into research BUT more importantly - research is about making a
difference to peoples’ lives
Summary
Don’t guess needs
Don’t replicate existing programmes
Coordinate with others
Enjoy the privilege and the responsibility of being a guest in a host country, and a global partner with colleagues
Don’t do nothing
Future plans
Building excellence: strengthening systems■ Learning exchange■ A collaborative MSc Palliative Care
((Distance Learning) between Hospice Uganda, Makerere, Edinburgh and Yale Universities
■ Shared teaching modules ■ Mentorship programme
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