Vicky (volunteer) offering practical support
We hope that you and your families continue well and safe.
Thank you for your continued support of our work, we are glad that our service has continued and that we are delighted to bring you some updates from the last few months. We are currently experiencing the 2ndwave of the COVID-19 pandemic and in lockdown, with restrictions in travel amongst others and this is currently impacting on our service as patients are unable to travel to receive care in the hospitals and so we are looking at alternative ways of making sure that our patients and their families continue to receive care for example using more of the telephone to provide consultations to a palliative care service nearest to them.
Sadly many of our team have lost their familiy members and friends to the pandemic. We keep everyone in prayer during these very difficult and trying times.
1. Patient and family care
In this period, we have seen 160 patients and families through providing pain relief, treatment of symptoms and other social and psychological care, these patients are from within Mulago hospital, Uganda Cancer Institute and Kiruddu hospital.
Below we share with you our volunteer, experiences of caring for our patients.
Making a difference and bringing hope in a seemingly hopeless situation; Volunteer’s experience in supporting refugee patients and families in a National Referral Setting.
G (not real names) a 14-year-old male diagnosed with acute myeloid leukemia was referred to the palliative care team by the primary pediatric oncology team for pain and symptom control.
As volunteers and part of the multidisciplinary palliative care team we regularly visited him and his father who was also his main care giver.
A good rapport was fostered, which allowed him to feel comfortable to voice his fears and concerns regarding his son’s illness, and social circumstances which included not being able to afford support for his 8 children, his inability to walk and move, missing school and friends and his dreams being shattered because of the illness.
While having physical issues our role as volunteers mostly related to practical, psychological, and spiritual aspects where we provided services such as advocating and liaising with other organizations like the African Humanitarian Action (AHA) who provided 60,000 Uganda shillings for support. As this was not enough to meet all their basic needs because his father had to send some back home to support his wife and the other siblings, we also provided 10,000 daily from our comfort funds (supported by UCT-UK) which helped boost him re his special diet/meals and also provided him with diapers which he would use as he is bed bound. We also offered psychosocial support by listening to his worries and concerns and counselled his father on how to change him after every two hours to prevent bed sores. We also offered spiritual support through praying and sharing encouraging scriptures.
He was able to appreciate the support and help given to them and had this to say “Thank you for all that you have done for me and my son you are just like his other parents that God has blessed us with, being refugees you have encouraged us and given us hope and continuously visited us without victimizing me and my son.
He is still on the ward and the clinical team and volunteers still visit him regularly when they can.
2. Education and training
Following another 6-week partial lockdown due to COVID in the country all training Institutions are currently once again closed but with ongoing support for online lessons offered by some of the institutions.
We have provided training for the following groups of professionals.
- Basic Palliative Care training for 42 health professionals from 7 districts of Uganda supported by the Laura Case Trust and Children Palliative Care Network (ICPCN), this was a 5-day training carried out in 2 sessions and will be followed by a clinical placement to a Palliative care service alongside mentoring and supervision from the PcERC/MPCU team.
- We have hosted 65 undergraduate students from Makerere University with lectures and 1-week placement for each one of them, this rotation is now complete and are awaiting their final exams for when the institutions are reopened.
- We have also given PC lectures to 56 students from the Islamic University in Uganda (IUIU) and a 1-week placement. We have now completed their semester their exams have been administered and marked.
- We have also been involved in the training of the Research module of the MSc ad BSC palliative care course at the Institute of Hospice and Palliative care of Hospice Africa Uganda, we had 10 and 15 students respectively. All lectures are now completed and are awaiting supervision of the research projects.
- We have also provided technical expertise to the training of 30 Health Care Workers in Adjumani district to our partner Peace Hospice Adjumani for the project; Transform, empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration supported by UK aid from the British people, more activities are planned for in the coming weeks.
- We have taught introduction to palliative care lectures to 260 students from Makerere University.
- Our 1-month placement and lectures for 2 the MMED Family Medicine students started on 3rd May and now completed.
- We have also hosted 13 MMed Internal Medicine students for a 1-month clinical placement and lectures on professionalism and ethics.
3. Research and Advocacy
We are working on the following projects;
- We have been in the process of developing a research protocol for our project Transform, empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration that is being implemented by a partnership between Cairdeas IPCT, Palliative Care Education and Research Consortium (PcERC) and Peace Hospice Adjumani and funded by UK aid from the British people. The research project looking at; Exploring the needs and lived experiences of people with chronic disease among the refugee and host communities of Obongi district and the experiences of Village Health Teams workers in providing palliative care, the proposal development is now complete and has been submitted for Ethics approval.
- Exploring Factors promoting social justice among refugees in Adjumani refugee camp, awaits ethis approval.
- Palliative care needs in the emergency department of Kiruddu hospital, Ethics approval has been obtained and data collection to commence.
UCI/PCAU conference 2021
The Uganda Cancer Institute/Palliative Care Association of Uganda ((UCI/PCAU) bi-ennal conference will take place on 23-24 September this year in Kampala, Uganda with the theme; Cancer and Palliative care during COVID-19 and other challenging situations. The team is involved in the scientific committee for the conference and has submitted the following abstracts;
- Integration of palliative care into healthcare provision for South Sudanese refugees and host communities in Adjumani and Obongi districts, Uganda; a Rapid Systems Appraisal evaluation
- Health Professionals’ Perceptions of Use Of Digital Technology in Palliative Cancer Care: A Multi- Centre Study in Uganda, Zimbabwe and Nigeria
- Empowering Health professionals through education and mentorship to improve children’s palliative care provision in Uganda
- Cancer Patients’ perceptions of their interactions with palliative care services in Uganda, Zimbabwe and Nigeria; a qualitative study
We have also attended the Annual General meeting (AGM) of the Palliative Care Association of Uganda on 28th May 2021.
We thank you for reading our updates and for your generous continuous support we wish everyone and your families good health and please keep us in prayer as we go through tough times with COVID-19.
God bless you
Children's palliative care training participants
Florence representing PcERC at the PCAU AGM