1. IMAI and palliative care Julia Downing; Sandy Gove; F. Akiiki Bitalabeho

2. WHO definition of Palliative Care Palliative care is an approach that: improves the quality of life of patients and families facing the problem of life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, pyscho-social and spiritual. will enhance quality of life, and may also positively influence the course of illness is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, or antiretroviral/OI therapy and includes those investigations needed to better understand and manage distressing clinical complications (Sepulveda et al, JPSM Nov 2002)

3. Palliative care for children –Palliative care for children is the active total care of the childs’ body, mind and spirit, and also involves giving support to the family. (WHO 2002)

4. IMAI and Palliative Care

5. IMAI approach and palliative care The first IMAI tools to be field-tested were for palliative care in 2003. Important part of HIV/AIDS care even with advent of ART Public health approach to home-based palliative care: –capable of achieving wide coverage using locally adapted simplified, standardized, integrated tools. –used in many different countries e.g. Uganda, Namibia, Kenya, Ethiopia

6. IMAI approach to palliative care- core materials: Palliative Care Guidelines for first-level facility health workers for clinical management and back- up to home-based care: 2 day clinical training course for nurses Caregiver Education Booklet to prepare families and community-based carers to provide effective home care Second level learning programme - under development for doctors and clinical officers Country adaptation – is being used in many countries and adapted to situation

7. IMAI and Palliative Care Training The training : -skills health workers -educates caregivers -supports patients to form an effective partnership between the HCW, the caregiver and the patient as members of an integrated health team, providing high quality care at the health facility and at home. Innovative training methodology- involving PLHIV as Patient- Expert Trainers. PC training targets all health cadres therefore supporting and enabling task shifting e.g. Nurse prescribing Development of skills is key

8. Current Palliative Care IMAI work Review of primary care guideline module and update re caregivers PC section of second level learning programme Review and finalise for printing training materials Review adaptation guide section on PC Input into IMAI pre-service training module

9. Other palliative care activities Competencies for PC Provide outline for short course in paediatric palliative care Developing protocol re validation of nurse prescribing

10. Challenges re IMAI and Palliative Care Palliative care module and training an orphan. Lack of understanding of palliative care, it’s importance and the public health approach Drug availability – used more for advocacy (Stjernsward, 2007) Follow up after training to consolidate knowledge and skills learnt. Quality assurance Harnessing the skills of Expert Patients.

11. Lessons Learnt and Recommendations Adequate palliative care for comprehensive HIV care. Integrated at all service levels. All health worker cadres trained. Need follow up and mentorship - Clinical mentors need to be thoroughly prepared to support symptom management and end of life care. Need pre-service as well as in-service training

12. …in all that we do lets not lose site of what really matters…….

13. Thank you