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