Winning posters from Berlin: Bringing palliative care education to South Sudanese Refugees in Uganda


Poster presentations are an essential cornerstone of every EAPC Congress – this year at the 16th EAPC World Congress in Berlin more than 1,100 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world.

Dr Mhoira LengMs Vicky Opia and  Professor Julia Downing, explain the background to their award-winning poster that describes how they developed, implemented and evaluated a palliative care education programme for healthcare workers and family caregivers who are providing health care to South Sudanese refugees in Uganda.

Clockwise: Julia Downing, Mhoira Leng and Vicky Opia.

Come with us to a group of well kept, simple thatched mud houses with cooking pots and a clay fire burning and a dramatic orange-headed lizard keeping an eye. Excited children laugh and crowd round our smiling young nurse, Sam, driving his boda boda – as motorbikes are called. Vicky Opia, specialist palliative care nurse and lead in the district, is directing our visit which is part of work we are doing to explore the holistic palliative care needs of this community, give specific training interventions and hear their experience.

Palliative care is a much neglected area along with chronic disease management in most humanitarian settings and we are seeking to answer the call to ‘give us data’ from the Ministry of Health and humanitarian sector planners. We are in Adjumani District, close to the border of South Sudan and where 1/4 million refugees have found a safe haven and a welcome from the Madi people who number almost the same as those they are hosting.

Today is a training day for Village Health Team (VHT) workers. We collect under the shade of a tree with only a flip chart to hand. The VHTs have been selected by their community and are given the chance to share their understanding of chronic illness and the challenges they face and then taken through three days of training covering identification of those in need of palliative care and first level interventions.

Adjumani: pictured are some of the members of the research group: Vicky (left), Mhoira and Dr Gursaral Purewal.

We have already trained 30 Health Care Workers (HCWs) from 15 health centres for five days to add to 20 HCWs previously trained and supported by Vicky and her team from the District Hospital and Peace Hospice Adjumani. Our 75 VHTs are from the same catchment area and next we are sensitising 150 family caregivers. These trained VHTs then helped us identify and survey members of the refugee communities with palliative care needs and we will share more of this in another post.

For our South Sudanese population, there has been so much trauma and change and they are glad to be safe but still struggling with the basics of living and concerns over the future. The opportunity to be trained adds dignity but also empowers communities. Evaluation results show significant improvement and we are struck by the comments from participants.

‘I know now how to communicate to patients and families’, ‘I know how to sensitise the community on palliative care’. ‘Today this wonderful training has come as an eye opener – to us and the community at large. Yes I know it’s a process, this must start with us who are in this room because as VHTs we need to be exemplary such that our patients and older people will live in peace and happiness which shall continue from generation to generation.’

Let Michael, on of our trained HCWs, have the last word:

Michael, a trained health care worker.

‘I am now a link nurse in the health centre. I was helping as a humanitarian person before but with no training, but now I have the real training I can really help people. Please give me further training and then I promise I will take these skills back to Nimule one day and make a difference in my country. I will bring palliative care to South Sudan.’



More about the authors…

Dr Mhoira Leng is medical director of Cairdeas International Palliative Care TrustDirector of the Palliative care Education and Research Consortiumand senior advisor for palliative care to Makerere University, in Uganda and the Global Health Academy, University of Edinburgh.
Ms Vicky Opia is a specialist palliative care nurse and district lead for the Ministry of Health and Director Peace Hospice Adjumani, Uganda.
Professor Julia Downing is Chief Executive of International Children’s Palliative Care Network (ICPCN)  and director at thePalliative care Education and Research Consortium and visiting Professor Makerere University.

Mhoira, Vicky and Julia are members of a research group that also includes Dr Gursaral Purewal, Ms Michelle McGannan, Ms Florence Nalutaaya, Dr Peace Bagasha and Dr Liz Grant.

Links and resources

Read the abstract of Development, Implementation and Evaluation of Palliative Care Education for Health Care Workers, Village Health Teams and Family Caregivers Providing Healthcare for South Sudanese Refugees in Adjumani District, Uganda, by Opia V, McGannon M, Nalutaaya F, Purewal G, Bagasha P, Grant L, Downing J, Leng M. Poster no: P01-551. (All abstracts are published in Palliative Medicine May 2019).

11th EAPC World CongressHave you been inspired by Mhoira, Vicky and Julia’s poster? Then why not submit your abstract for the 11th European Association for Palliative Care (EAPC) World Congress in Palermo?

Online abstract submission for #EAPC2020 now open! Visit the congress website for more information on the EAPC World Research Congress, Palermo, Italy – 14 to 16 May 2020. Submit your abstract now. (Closing date: 15 October 2019.

This entry was posted in 16th EAPC World Congress Berlin, EAPC World Congresses, Minority Communities, PALLIATIVE CARE IN HUMANITARIAN CRISES. Bookmark the permalink.

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