Bringing Hope Through Palliative Care in Uganda

Clinical care and relationships

In the three months of July, August, and September our clinical team, including social worker volunteers, visited our patients 1,024 times. We also contacted them by phone, with 779 calls during these months. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of patients of those who have died.  We are grateful for your continued support that enables the team to provide care to these patients and their families. 

This time we would like to share with you a story from our Clinical Lead, Liz

Palliative care for the whole family

No one ever wants cancer to touch their family. It can be a painful and tough journey for both the patient and family, and it bites harder in a resource limited setting, complicated with a late diagnosis when the only option and intent of treatment is palliative in nature. However, there can also be moments of great joy in the face of such hardship! 

Janet, not real name, a 32-year-old female patient diagnosed with advanced breast cancer of the breast, was also pregnant and expecting a precious baby. During the pregnancy, Janet’s condition deteriorated every other day. And so, the baby was delivered early by cesarean section at 28 weeks in the hope that she would receive palliative chemotherapy as the cancer had spread to her liver, lung and brain. As a palliative care unit, we were consulted for pain management and end of life counseling. 

Pain was managed well, but we found that Janet and her husband’s main distress was that Janet was dying and had not even seen her newborn baby. We found out that the baby, after being delivered early, was taken away to a neonatal ward in a different hospital. While the baby was ready to be discharged, the family did not have the money to pay all the bills and to receive their baby. So, our palliative care team together with the hospital social worker, managed to help Janet get a wavier in that hospital due to her economic and health situation. Finally, the baby was reunited with the mother, our patient Janet!

On seeing her baby, Janet smiled and had this to say: “Thank you for fighting for my last Joy, even if I die now, I will rest in peace! You are the best team I have ever met in my difficult journey. I am thankful to God for this miracle!”

With their baby, the family, and  request to be allowed home, where she died a week later with her loved ones around her. The family was visited by the hospice team in their community for continuity of care and support. We are very grateful for each and every one of our donor’s support, which goes a long way to enable us to help our patients like Janet and the families—including the newborn—during this season of their lives.

Patient demographics

We have continued to care for patients and their families during and after their hospital stay and whenever possible, when a patient is discharged, the team follows up to provide further support via telephone including referral to another palliative care service in their home area. Our aim is that the patients have their pain and other symptoms managed by the time they are discharged from the hospital. 

We were honoured to care for 189 patients and their families on our program, in both Mulago and Kiruddu Hospitals in Kampala. Where the patient died (R.I.P. on Ward) the team continues to provide bereavement support through the grieving process. Please look to the bottom of the report for charts or graphics about the patients we serve. 

Educational activities 

Our experienced team has continued to train and mentor other health care workers from within the county and outside, from clinical clerkships with postgraduate doctors through partner Makerere University. Our mission is to promote excellent and accessible palliative care services for all. We continue to train both on the ward (clinical, hands-on practice) and through presentations and organised training sessions. 

In the last three months, we have trained and mentored the following categories of professionals:

• Healthcare professionals training, second cadre of nurses, social workers, and pharmacists at Kiruddu Hospital. The training was completed for 15 professionals over the course of two days to help integrate palliative care into the health system.
• Three Uganda Heart Institute staff went on placement with our palliative care team in August to better understand palliative care in terms of cardiology.
• Undergraduate and Postgraduate trainings for medical students in palliative care from IUIU (41 students), St Augustine (8 students), King Caeser (7 students) and Makerere University (78 students).
• A one-day hospital-based integrated palliative care training for 12 international healthcare professionals around from Africa was held in partnership with the Hospice Africa Uganda course in palliative care.
• Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme continues in partnership with Burdett Trust for Nursing, Global Health Academy (The University of Edinburgh) and the International Children’s Palliative Care Network (ICPCN). Mentorship visits were done with the nursing fellows over several months. In September, a three-day workshop was held in person in Kampala, then fourteen fellows joined our team at a national conference for Palliative Care. 

Research and conference presentations

Our team was pleased to be a part of the 4th Uganda Conference on Cancer and Palliative Care, held by the Palliative Care Association of Uganda and the Uganda Cancer Institute. From September 14^th to the 15^th we presented on the following: 

• Uganda Children’s Palliative Care Nurse Leadership Fellowship Programme, by Senior Nurse Florence
• Telling our story; experience of living with a chronic illness; community generated data using Photovoice in Adjumani and Obongi districts, by Social worker Toko
• Mobile technologies for palliative cancer care in Uganda: Qualitative secondary analysis of health professional perspectives, by Clinical lead Liz
• Understanding VHTs experiences of providing palliative care and offering mentorship to other VHTs to provide Palliative Care in refugee and host communities of Obongi and Adjumani districts, by Dr Liz
• ADdressing Spiritual and Psychosocial Dimensions of Children in Oncology and Palliative Care, by Prof Julia

Dr Liz also received the lifetime achievement award for doctors during the conference. As a team, we are so proud of this accomplishment and thankful for her role in the team as a senior consultant in research, clinical services, and education. 

We hope you have enjoyed reading our update! If you have any questions or feedback, please do send us an email at info.pcerc@gmail.com.

Best wishes, 

The PcERC team.

Clinical care and relationships

In the three months of March, April and May our clinical team, including social worker volunteers, visited our patients 1,139 times. We also contacted them by phone, with 847 calls in this time. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of patients of those who have died.  We are grateful for your continued support that enables the team to provide care to these patients and their families. 

 This time we would like to share with you a story from one our own team. Please read Ronald’s story below; 

“I WENT THROUGH IT; I UNDERSTAND THE PAIN CANCER PATIENTS GO THROUGH”

My name is Ronald, a cancer patient survivor. Currently I am a volunteer social worker, working with the Palliative care Education and Research Consortium (PcERC) in Mulago Hospital.

For 12 years I have been practicing my social worker skills in Mulago Hospital. It has helped me to become a better social worker and to understand that when our patients die, they die with dignity and with quality of life. Patients with palliative care needs, though they are sick, they still have value and are equally important like any other human being.

Through my volunteering, I have been involved in many trainings (such as the COME hospital care training), whereby we were equipped with skills of caring for patients and their families. I have gained skills in some research activities, such as data transcribing.

Working in the hospital has greatly improved my interpersonal relationship skills and communication skills. I have learned to be a good listener, a good decision maker, and not to be judgmental to people for the mistakes they made in the past.

However, there has been also challenges I have encountered when doing palliative care and these include:

1.  The problem of language barriers. It has been always difficult to communicate to certain patients, such as refugees. At times you find that you need an interpreter, which makes communication a bit difficult in cases where you don't have any one to translate to their local language.
2. The myth that people think palliative care is only for the dying patient. Some patients and their families do not welcome us with open arms because they think that when the palliative care team come to visit, the patient then is going to die. Therefore, there is a big need to sensitize people to start palliative care at the onset of the disease. 

Thank you to all the donors and partners for all the support you give to our palliative care unit. For me, personally, I really appreciate the good work you do through supporting our patients and the activities of PcERC.

Patient demographics

We have continued to care for patients and their families during and after their hospital stay and whenever possible, when a patient is discharged the team follows up to provide further support via telephone including referral to another palliative care service in their home area. The majority of our patients have their pain and other symptoms managed by the time they are discharged from the hospital. 

We were honoured to care for 148 patients and their families on our program, in both Mulago and Kiruddu hospital through 1,139 physical reviews and 847 telephone calls. where the patient died (R.I.P. on Ward) the team continues to provide bereavement support through the grieving process.

Please look at the pictures for charts or graphics about the patients we serve. 

Educational activities 

Our experienced team has continued to train and mentor other health care workers from within the county and outside, from clinical clerkships with postgraduate doctors through partner Makerere University. our mission is to promote excellent and accessible palliative care services for all. In the last three months, we have trained and mentored the following categories of professionals; 

• We continue to train both on the ward (clinical, hands-on practice) and through presentations and organised training sessions. 
• We have hosted 11 undergraduate students from Makerere University for a 1 week’s rotation in the palliative care unit. 
• As part of the research activities supported by Cairdeas IPCT we conducted a refresher training in March in the use of the photovoice data collection methodology for 22 Village Health Teams in Adjumani and Obongi districts together with our partner Peace Hospice Adjumani. 
• In March we commenced mentorship and support supervision visits at place of work for 16 participants on the Uganda Nurse Leadership Fellowship Program from the 8 districts of Uganda were the participants come from, this activity is being carried out by our senior Palliative care nurses from Palliative Education Research Consortium (PcERC) -- Florence and Peace Hospice Adjumani (PEACHOA) - Vicky and is ongoing.
• We have also hosted 19 nursing students from the Mulago Nursing school between April-May for their hands on practical experience following their classroom lectures. 
• Through our international collaborations we have also been privileged to host 2 international students from the University of California, USA and Tulane each on a 4-week rotation in palliative care. 
• In the month of June, we completed the final session of Health Workers Palliative Care training at Kiruddu hospital for 15 professionals facilitated by the PcERC team with funding from Cairdeas International Palliative Care Trust (Cairdeas IPCT), and it will be followed by hands on experience for all participants working alongside our specialist team.
• On the 13^th September we will be holding a Pre-conference workshop as part of the 4^th Uganda Conference on Cancer care and will be run by the International Children Palliative Care Network (ICPCN), University of Edinburgh and Palliative Care Education Research Consortium (PcERC) and funded by the Burdett Trust for Nursing Participants of the Uganda Paediatric Nurse leadership program

Research and Conference activities

As the Palliative Care fraternity in Uganda prepares to hold the 4^th Uganda Conference on Cancer and Palliative Care conference, due to take place 14^th-15^th September in Kampala, the team is pleased to submit 5 abstracts from our work that included;

1. Uganda Children’s Palliative Care Nurse Leadership Fellowship Programme
2. The lived experiences of people with serious chronic illness among the refugee and host communities of Obongi districts
3. Telling our story; experience of living with a chronic illness; community generated data using Photovoice in Adjumani and Obongi districts 
4. Mobile technologies for palliative cancer care in Uganda: Qualitative secondary analysis of health professional perspectives 
5. Understanding VHTs experiences of providing palliative care and offering mentorship to other VHTs to provide Palliative Care in refugee and host communities of Obongi and Adjumani districts.

We look forward to sharing our work at this conference.  Please look out for highlights from the conference in our next updates report. 

We hope you have enjoyed reading our update! If you have any questions or feedback, please do email u info.pcerc@gmail.com.

Best wishes, 

PcERC team.