Bringing Hope Through Palliative Care in Uganda

Warm greetings to you all from our team! 

We are once again delighted to share with you updates from our work in the last 3 months. 

1. Patient care 

With the ease in the travel restrictions due to COVID-19, more patients are now able to get to the hospitals for treatment and the numbers that we see have gone up compared to the previous months of lockdown. 

In the last 3 months, the team has cared for 164 patients and families with 86 physical contacts and 315 telephone contacts. 

Below our volunteer Ronald shares his experience caring and bringing hope to our patients and their families. 

Sarah (not herreal name) is a 3-year-old female child diagnosed with Wilm’s tumor and comes from the western part of Uganda. She was referred to the Palliative care team for pain and symptom management.

She was well until 2021, when she got abdominal pain and was taken to the clinic with no response. Then in June this year an ultrasound scan was done and they told that she had developed a kidney problem.

It`s now two weeks since she has been under the palliative care programme where hope and peace are being  restored to Sarah and her family. We work as a multidisciplinary team of doctors, nurses and volunteers. We were able to visit her and her family regularly and as volunteers we became very  interested with her psychosocial needs which were causing a lot of concern and distress to her and the other family members.   

As volunteers our role was to bring hope, peace and harmony to both Sarah and her family through continuous visits, counselling and offering practical support by picking drugs for them at the pharmacy. 

The mother said this to us, “I am privileged to have such a loving and caring team that visits us every day, please keep coming even when we are discharged back home! You are a very unique and special group we feel valued”.

2. Education & Training 

2.1 Training of undergraduate medical students and postgraduate students

We have been involved in training of the following categories of students; 

• 120 medical students from Makerere University
• 22 medical students from the Islamic University of Uganda 

Below we share some of their thoughts after their clinical rotations with us. 

“I have had a good experience here and I have gained more knowledge of what palliative care is all about and the different symptoms, assessment and management for terminally ill patients. I am grateful to the palliative care team for teaching me and the guidance throughout my rotation”. (Medical student)

"Palliative care is a field where most of the people are neglected and yet it is of more value to the patient’s care and quality of life. So empathy is so much needed here, today its him/her tomorrow it me” (Medical student)

2.2 Training of health care workers

• In collaboration with our partners Cairdeas IPCT and  Peace Hospice Adjumani we have supported training of  20 Health care workers in Adjumani district, 60 Village Health Teams, and completed 36 interviews of a Rapid Systems Appraisal, this is all part of partnership to implement the  project Titled; Transforming, empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration in Adjumani and Obongi districts and is funded by UKaid.

3. Online learning and discussions:

In this period, we have attended a number of online discussions that included; 

• 9^th July: COVID-19 Communication: What are the tools and messages for communities and families in Uganda session, organised by the Palliative Care Association of Uganda. 
• 13 July: COVID-19 clinical care and prevention session organised by the African Palliative Care Association and Makerere Medical School Cohort 1986. 
• 23^-24 September; 3^rd Conference on Cancer and Palliative care in Uganda; with the theme: Cancer and Palliative Care in COVID-19 and other challenging situations. We are delighted to have had 4 presentations at this international conference that was very well attended, with Prof Julia co-Chairing the Scientific Committee and Dr Liz being a member of the scientific committee.

4. Research and research related activities

• We now have ethics approval for our research for the project titled: “Exploring the needs of lived experiences of people with chronic illness disease among the refugees and host communities of Obongi district and the experiences of VHT workers in providing palliative care”, we anticipate data collection to commence in the later of the year with funding with UKaid.
• We have completed a further 36 interviews as part of the Rapid systems Appraisal at the preliminary results have been presented at the 3^rd Uganda Conference on Cancer and Palliative care that took place on 23-24 September, Kampala, Uganda.

We had another 3 abstracts accepted and presented at the above conference including; 

• Cancer Patients’ perceptions of their interactions with palliative care services in Uganda, Zimbabwe and Nigeria; a qualitative study
• Empowering Health professionals through education and mentorship to improve children’s palliative care provision in Uganda.
• Health Professionals’ Perceptions of the Use Of Digital Technology in Palliative Cancer Care:  A Multi- Centre Study in Uganda, Zimbabwe and Nigeria

Thank you so much for taking time to read our updates, we will be sharing regularly and for more information about our work please free to contact us on; info.pcerc@gmail.com

God bless you all #stay safe