African Palliative Care Association

End of an (occasionally closed!) long road

‘It’s been exhausting and challenging, but we are getting there,’ reflected Geoffrey Banga, one of the researchers working on phase 1 of the PEPFAR Palliative Care Public Health Evaluation.

This phase entailed a survey of service configuration and activity using quantitative and qualitative descriptive data from staff and patients to measure the components and models of care among a random sample of 10% of PEPFAR-funded sites in Kenya and Uganda (n=120 in total).

Six months after the study commenced, the researchers identified a number of significant challenges to their work.

Challenges

  • Stigma: Given the subject matter, and the social stigma that continues to be attached to the illness, some respondents refused to participate in the study’s focus groups for fear of being ostracised as HIV+ clients.  This was a problem in some parts of Central and Western Uganda.
  • Accessibility: Most facilities proved difficult to access given poor road infrastructure, aA_typical_road_that_was_hit.png problem that was exacerbated the further one travelled from major towns.  Climatic conditions also proved problematic; for example, due to prolonged heavy rains, the flooded areas around Teso region, Easter Uganda, were practically impassable.
  • Record keeping: The limitations of existing health management information systems were noticeable in some facilities, with data often not disaggregated for more detailed analysis.  Indeed, in some settings, it was nearly impossible to gather meaningful statistical information.
  • Research fatigue: Despite donor interest in gathering reliable information on HIV/AIDS service provision, many patients who had already been involved in multiple research projects were wary of taking part in additional research. With limited feedback on their previous involvement, some felt they were being used.
  • Addressing research expectations: Respondents often had various expectations arising from the study.  Some of these expectations involved the receipt of tangible rewards for participation (either monetary or non-pecuniary rewards), whilst others anticipated a general improvement in the services offered. Ensuring that these expectations were addressed diplomatically so that they were realistic often proved a challenge. 
  • Language barrier: The fact that Uganda is comprised of 30 distinct tribes speaking 30 different languages, whilst in Kenya there are 42 tribes, resulted in significant challenges to the study’s data collection tools, with each being translated into more than two languages depending upon the area and tribes covered.

Lessons learnt
Arising from their experiences, the researchers’ identified a number of lessons that were collectively learnt:

  • The facilities are offering a wide range of services aimed at contributing to PEPFAR’s treatment and preventive care goals (e.g. some provide spiritual and psycho-socio care, others medication and preventive care).
  • APCA has formed a number of useful relationships with staff at the various health facilities visited that bode well for future research collaboration.
  • Service managers appreciated being consulted earlier about the nature of the research study to be conducted at their facilities.
  • APCA has forged useful links with multiple partners to ensure that this project progresses (i.e. the Ministries of Health, the Monitoring and Evaluation of Emergency Plan Progress [MEEPP], the Centre for Diseases Control and Prevention, and the USAID, and many more).

Way-forward
Following the success of phase 1, phase II is scheduled to begin in October 2007 and continue for the next 9 months. This phase of the study will focus on the outcomes of PEPFAR-funded palliative care using longitudinal prospective quantitative outcome data on new patients, measuring both quality of life and core palliative outcomes (using the APCA African POS, among others), and current patient and staff interviews to explore service issues in more depth.  An additional cost analysis component will be included in this phase to compare outcomes with their associated costs.

It is hoped that the lessons learnt during phase 1 will help inform phase 2 data collection, resulting in a smoother ride for all!