Increased access to paediatric palliative care services for children and teenagers in the rural communities of Luri County – Jubek state, South Sudan.

The project is much needed basing on the fact that about 80% of children in Africa die at home without seeing a health worker. Each year there are approximately 166,000 children diagnosed of worldwide, 84% are from developing world. Each year there are at least 80,000 deaths from cancer in children, while HIV/AIDS is responsible for 332,000 child deaths in Africa. Our experience in implementing Paediatric Palliative Care in South Sudan has indicated that there is immense need for these services in many states of the country that we are currently not able to reach. Almost 80% of the patients enrolled on Women Relief Organisation health programme are poor with low income levels and poor living conditions thus, can’t afford or access quality Palliative Care due to persistent and continued civil wars.

With such economic impoverishment patients’ most patients report late for investigation due to lack of funds for medical treatment  and cannot afford transport to referral health centers or food while in referral hospitals and other health centres, their children miss attending schools. With the ending 1 year funding from Medair  South Sudan, Women Relief Organisation under the Paediatric Palliative Care project, 550 children in and around Jubek state have receive treatment for HIV/AIDs and/or cancer and as a result have had their lives extended. In addition their parents no longer need to spend scarce resources on herbalists and witchdoctors. 20 health workers have been trained in good practice in palliative care for children. This is has been the first service of its kind specifically for children in Jubek state and probably South Sudan. The APCA project is coming to an end this year and as a result, there is urgent need to continue this project of Paediatric Palliative Care with people at the fore front of demanding their government for increased services in palliative care services to all in need.

الأهداف العامة: 
This project intends to increase access of paediatric palliative care services to 300 children and teenagers in the rural communities in Jubek state of South Sudan where paediatric and youth health care services are limited. This will be achieved through providing holistic palliative care services to patients and their families aimed at improving quality of life. This project will ensure that children have access to essentials drugs, basic care, play therapy and investigations at New site Health Centre, home and hospital visits and outreach program in communities. The project will also contribute to the overall goals and aspirations of SDGs including improved health, empowerment of women and enhanced life of a child.
1. Community mobilization and training of 20 volunteer caregivers in palliative care and follow‐up. 2. Home and hospital visits for bed ridden children and teenagers (Home visits for treatment of Opportunistic infections and for adherence monitoring). 3. Purchase and equipping necessary children play materials and equipment at hospital (New Site Health Centre to help children coming for palliative care services play with them). 4. Procure and provide essential drugs to children and teenager patients (Purchase of drugs for pain relief and for treatment of opportunistic infections). 5. Conduct investigation for patients and provide referrals. 6. Conduct health education talks to patients and household members of patients. 7. Hold 10 advocacy meetings with various local leaders, health works in hospitals and health centres for access to children and teenager palliative care.
a. Immediate results 1. Increased access of Paediatric palliative care services for 300 children and teenagers diagnosed with cancer and/or HIV/AIDS. This will also result into reduction in deaths among the target population. Children with cancer or infected with HIV/AIDS will receive appropriate healthcare earlier to extend their lives and reduce the need for pursuing time‐consuming and inappropriate care on the part of their families. 2. Increased retention in schools for school going children and teenagers and families will benefit through having their school age care givers being able to attend school. 3. It increased the standard of care and thus decrease the time spent nursing children. As a result time will be spared to engage in economic activities, particularly but not exclusively for women. This is because increasingly, women are getting involved in economic activities. In addition the resources spent on medication could be reallocated to further improve household well‐being. b. Longer term results This project will promote and lead to quality of life for children and teenagers with HIV, cancer and other non-communicable diseases with increased awareness, access to paediatric Palliative care. People in communities through training, awareness and engagements with duty bearers, will gain improved ability and confidence to demand for palliative care and hold duty bearers to account, leading to recognition of palliative care as a right and improve quality of life for patients with zero tolerance to any form of stigmatization. As a result of this project these are the things we hope to be part of bringing about with your support: 1. South Sudan increasing its position on the Quality of Death index, leading to improved standards of care for the terminally ill children across the continent. 2. A narrowing of the gaps that exist so that quality of death is less linked to wealth. 3. Growing understanding across the continent that good palliative care brings enormous social and economic benefits and represents a wise investment of scarce healthcare resources.
تاريخ البداية
ثلاثاء, 25/08/2020 - 4:00pm
حالة المشروع
1 Year
قطاع(ات) التدخل:
مكان المشروع:
Munuki 211 Juba , Central Equatoria
South Sudan
الهاتف: +211925695599
Central Equatoria SS
تعاون مع منظمات أخرى
APCA Uganda