By Florence Nalutaya | Senior Nurse
In the past months of June, July, August, and September 2024 we have continued to provide holistic and compassionate palliative care through our clinical team alongside our volunteer social workers to patients with life limiting illnesses and their families both the Mulago and Kiruddu National Referral Hospitals. This is aimed at improving their quality of lives and giving them hope amidst their hopeless situations. Your support has extremely contributed to the holistic care that we provide to our patients and their families to improve their quality of life therefore we are forever grateful.
Patient demographics:
During the four months’ period, 298 patients benefited from palliative care interventions and 894 family caregivers were supported for sustainable quality care. Among these, 187 were new consultations (96 women and 91 men), requiring specialist input from both Mulago and Kiruddu hospitals and out of these 14% were children. ALongside bereavement care, we carried out 4,053 physical contacts and 1,823 telephone contacts. Among the services offered are symptom management, psychosocial and spiritual care and support. We build capacity through clinical modelling and mentorship enabling people to provide ogeneralist care to 171 patients, 42 of whom were referred to the team for specialist care in both hospitals.
Education activities
We have continued to train and mentor medical and nursing students on placements both under and post graduate. This promotes knowledge transfer and enhances their palliative care skills and competences required for integration and sustainability in their own setting. We also completed a Nurse Leadership Fellowship in children’s palliative care from different parts of the country, and this was followed by a stakeholders meetings aimed at identifying strategies for strengthening children palliative care. We also held a PC Grand roun looking at health care in conflict and fragule settings with a focus on non-communicable diseases and palliative care, which was well attended. In this period, we have hosted and provided training to the following students.
The Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme (UCPCNLFP) has taken a promising step forward in improving the lives of Ugandan children in need of palliative care. By equipping nurses with the necessary leadership skills and fostering collaboration, the programme has the potential to create a sustainable impact, thus improving the quality of life for countless children and their families. The stake holders meeting was very successful and it was agreed that the peadiatric palliative care should be integrated in the existing curriculum. Palliative care for all age groups will continue to be accessed and integrated through clinical modelling by allowing all interns both doctors and nurses to have placement in palliative care unit the commissioner of nursing assured the stake holders that she will spear head this mission and we shall have more meetings with the nurses governing body.
Advanced Diploma in Palliative Care Nursing (ADPCN):
In the month of September, we hosted 4 nurse prescribers undertaking the Advanced Diploma at Mulago Nursing School, during this placement we offered mentorship and clinical modelling with each of the students working alongside our specialist team. On evaluation they demonstrated improved skills and competences in effective communication, pain and symptom management in holistic palliative care.
Clinical care
The mother to one of the children who died - a 12 year old with rhabdomyosarcoma said, “you stood with me I wouldn’t manage how to go about the situation as we were deserted by pt. X ‘s father and my mother in-law was physically abusive to my son who was generally too weak to do house work - this made him to dis appear form her for two weeks ...... I was so bitter with my in- law but since we discussed with the PC team I had to let things go my heart got peace let my son rest in peace thank you, thank you team."
During a family meeting one family members said, "I didn’t know that, there are still health workers caring like you people you have offered your time to explain to us what is happening to our patient knowing the truth about our patient has made us to appreciate the care given to us so longer as we shall be able to be helped near home lets prepare ourselves and its worthy to be near home instead of staying in Kampala which is very far from Soroti."
Janes Journey: Navigating Motherhood Alone.
While Palliative care is a holistic approach to care that focuses on improving the quality of life of patients and their families regardless of the stage of the disease or prognosis including sickle cell. Janes 12-year old child was diagnosed with sickle cell disease and a stroke. She was referred by the multidisciplinary team for pain and symptom control and that is when the palliative care team and the volunteer social workers met her. This is what she had to say, “sometimes at night, I cry when my daughter is asleep, thus she won’t see how scared I am and this is because I’m worried about her future whether she’ll have a normal life, about the pain it’s worse when she is in crisis and this this is inevitable”.
Her husband, however, wasn’t as enthusiastic. From the beginning he made it clear that he wasn’t interested in becoming a father to a sickler and soon after he distanced himself from the situation. He remained uninvolved, he didn't come to offer emotional support, or even check in to see how she was doing. Jane was left to face each doctor’s visit alone, trying to remember everything the healthcare providers told her while managing her growing sense of isolation. The financial strain also became overwhelming -she was working a full-time job, but without the husband’s contribution, prenatal care, and later childcare became a heavy burden.
Emotionally, it was draining - she tried reaching out to the husband multiple times, hoping he might change his mind and take on a more active role in their child’s life. Each time she was met with excuses or outright avoidance. As the disease progressed so did her feelings of resentment and abandonment. She had envisioned cooperating with the husband, sharing the joys and fears but that dream was shattered. Jane had to take unpaid leave from work being a social worker by profession and her savings quickly dwindled. The sleepless night’s, constant feedings, and overwhelming sense of responsibility felt like an impossible weight to carry alone.
Her husband didn’t come to the hospital and he didn’t visit as the gap between them widened as he chose to be absent, leaving Jane to care for her daughter without any of the support she had once hoped for. Friends and family stepped in where they could, but it wasn’t the same. Jane often felt like she was failing despite doing her best. There were days she would break down, feeling overwhelmed by the emotional toll of raising her child without the support of the person she had once trusted.
Over time, Jane found strength in her situation, she built a strong support network of fellow single mothers, leaned on her family, and even sought counselling from the palliative care team and volunteer social workers to help process her feelings of abandonment, providing her with legal support since the husband had neglected his roles and duties as a father. It wasn’t the life she had planned, but she was determined to give her daughter the love and stability she needed, even without the father in the picture.
Despite the hardship, Juliet learned to rely on her inner strength she became a fierce advocate for herself and her daughter, making peace with the fact that sometimes people will not be who you need them to be. But she also learned that, with or without the husband she had everything she needed to raise her child, courage, resilience and an unshakable love for her daughter.
Mothers who care for children with sickle cell disease (SCD) often experience a unique and emoptionally intense journey.
Jane 's story is a common one, showing the struggles many women face when raising a child without the support of the father. Yet, it’s also a story of hope and resilience, illustrating the strength it takes to navigate parenthood alone and the support received from the palliative care team.
Research activities:
We have two research projects that were approved by the Ethics committees (Mulago IRB) one has commenced and we are soon starting the PARASTOP Study - Paracetamol with Strong Opioids – PARASTOP; A randomised, double-blind, parallel-group non-inferiority phase III withdrawal trial of paracetamol versus placebo in conjunction with opioids for moderate to severe cancer-related pain and is being sponsored by the Oslo University Hospital
We hope you have enjoyed reading our update! If you have any questions or feedback, please do send us an email a info.pcerc@gmail.com
Best wishes,
The PcERC/MMPCU team.
By Grace Kivumbi | Project Manager
By Grace Kivumbi | Project manager
Project reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
If you donate to this project or have donated to this project, you can receive an email when this project posts a report. You can also subscribe for reports without donating.
Support this important cause by creating a personalized fundraising page.
Start a Fundraiser
