Our Every Child Counts project began in October 2023 covering three Kenyan counties; Kajiado, Meru and Siaya. Designed to address three key barriers to the development and delivery of child palliative care; Lack of health workers with knowledge and skills in child palliative care, Stigma and discrimination and Low demand from affected families, the project has reached its half way point and here we share the achievements to date.
204 community health volunteers have been trained to date (148 women and 56 men), their training covering child palliative care in the home, psycho-social support to families and child safeguarding. 69 volunteers have already been linked with families in their communities for home-based care.
“The training has been of great impact as I can now provide support and accurate information to families with a child with cancer and other conditions which require palliative care in my community. I feel confident to refer children and give valuable advice to parents all because of the skills and knowledge I have learnt.”
Sharon Kajuju – trained community health volunteer
Community health volunteers training in Mulaha, Siaya (right) and Meru national park area (left)
85 paediatric and oncology doctors were trained in child pain management and appropriate referral systems for children with palliative care need. The training has successfully improved health care workers’ knowledge, confidence, and engagement in providing comprehensive palliative care to children. The training dispelled the belief that child palliative care is only for HIV/AIDS and cancer patients, broadening their understanding. Health care workers are now actively tracking children with palliative care needs, conducting follow-ups, and consulting with the hospice team.
Community meetings have been held with 217 community and religious leaders with positive messaging and information on life-limiting illness and disability. Community leaders reported that awareness sessions significantly changed their perception of hospice care, dispelling the belief that it is only for dying patients. Leaders feel more capable of recognizing warning signs of children with life-limiting illnesses and committed to referring patients to hospice services and supporting those in need within their communities. We have already seen an increase in referrals for children with palliative care needs. The training sessions have been instrumental in enhancing community leaders’ understanding and proactive involvement in palliative care, fostering a supportive environment for children with life-limiting illnesses.
“I have never attended this kind of meeting before, but am happy to have attended because I have been taught a lot things by the Hospice team, identifying children with palliative care needs, protecting abused children”.
Village elder, hono
“As a religious leader, I am happy that I will share the teachings received from Siaya Hospice Team with my congregation, I did not know what palliative care is but now I can teach my congregation on how to identify children with palliative care needs”,
church elder, kaluo
“There is a child in my village and I have never understood why he didn’t attend school despite taking medicine. I will be sure to follow-up the family. Thank you for coming to enlighten us.”
Ole Tolua – Chair of community elders
Meeting with Hono community, Siaya and Embao community, Kajiado West
377 teachers and 10,987 school children have been reached in visits to 29 schools across the 3 counties where children and teachers were engaged through dance and singing and encouraged to think about and discuss the challenges faced by children with palliative care needs. The training has effectively empowered teachers to actively recognize and support students with palliative care needs, enhancing the overall care and support system within schools. Teachers pledged to champion the care of children with palliative care needs within their schools. They committed to identifying and referring children with health challenges to the appropriate hospice team.
“I had no idea what palliative care was since I am a teacher not medic, but I am happy that I have received knowledge on it and will champion to see that children with such needs are well taken care of in our school”.
Teacher at Mbaga mixed primary school
“We have been noticing some children with different challenges, some are always sick and on off at school. Most of the teachers were not aware of their sickness, but after the palliative care talk we as teachers will be on the front line to identify such children and call Siaya Roselyne Hospice team”.
teacher at siaya central primary school
“It is difficult for teachers to do follow-up of sick children due to the culture; parents always keep off the child from school without communication. I will do more to make contact with these families and encourage the child to school”.
Monka – Teacher at Olekemunke school
Events at a Meru primary school (left) and Embolie Primary school, Kajiado West (right)
66 children with palliative care needs, previously not receiving appropriate care, have already been identified (143% increase on numbers registered before the project). The process of meeting with families to encourage them to register with the hospice and linking families with a trained volunteers and regular home visiting is underway.
“Ever since I was referred to the Siaya Hospice, my life has been getting better and better by the day. My pain is managed very well and I can go to school like other children”.
Brian, Burkitts Lymphoma patient
“We now understand our child illness better, there before in hospitals doctors are so busy and listening to one person for long is hard. Thank you ONPACC team for explaining and showing us love and how to manage Brian”.
alice, caregiver
Staff from ONPACC have been working with Daniel and his family after discovering he had been kept at home away from school due to his disability. He has been referred to hospital and ONPACC will support his travel and transport, and will continue to support the family in the community.
Brian, once a lively boy, became withdrawn due to constant pain and swelling. His parents visited multiple hospitals and even a witch doctor, without answers. Finally, at Siaya Hospice and hospital, Brian was diagnosed with Burkitt’s lymphoma, shocking his family and causing significant emotional and financial strain. Support from the hospice and the HCK grant provided counselling, nutritional aid, and regular home visits. This comprehensive care allowed Brian to return to school and engage in everyday activities.
“I am happy my parents and I were introduced to Siaya Hospice where we were received with a lot of care and compassion, so much love was shown to us. The team has been visiting me and my family and the visits bring a lot of peace, comfort and love in my heart”
~Brian Omori (photo left), 10 years old from Randago, Siaya
Thank you and congratulations to our Kenyan partners; ONPACC, Siaya Hospice and Meru Hospice, on their hard work and achievements.
Please DONATE TODAY to help us roll-out this project across further Kenyan counties to reach more children and families in need of life-changing palliative care.