Vision
Mission
Our Service
Palliative care is an approach that improves the quality of life of patients and their families, facing the problems associated with life-threatening illnesses through the prevention and relief of suffering.
Effective Childhood Palliative Care (CPC) practices cover 4 pillars: physical, psychological, social and spiritual care for children and their family members (WHO, 2019).
New Hope Children’s hostel’s services provide:
Physical Care
Physical symptoms of childhood cancer are diverse but often associated with severe body pain, nausea, fever and sickness. Chemotherapy and radiation weaken the body, causing higher vulnerability to infections, comorbidities and secondary symptoms (WHO, 2018).
- New Hope Children’s hostel nurse daily checks each child’s vital signs ie: systolic blood pressure, pulse, body temperature, MUAC = mid-upper arm circumference as an indicator of malnutrition and weight. Head circumference and height for smaller children.
- Children with severe acute and moderate malnutrition are put on a special diet.
- Pain management through supervising pain medication like oral morphine prescribed at the UCI is done by the hostel nurse.
- Our nurses help the parents give their children other medication prescribed by UCI.
Wound dressing & cleaning is an important part of the care. - In the case of an emergency, first aid is provided and then the child is rushed to UCI for treatment.
- When a child’s illness is diagnosed as terminal at UCI, they are referred to a Hospice near their village for end-of-life care. We ensure we link them to the hospice near their home for continuous care.
Psychological Care
Other than the physical strain these children and their caregivers often show high psychological distress, displaying symptoms for anxiety, depression, and post-traumatic stress. (Kreitler, Weyl, Ben – Arush, & Martin, 2012).
- The New Hope Children’s hostel’s social worker assesses the mental health of the children and their caregivers.
- Counselling sessions for children and caregivers are provided by our social worker. Individual counselling sessions are held weekly as well as on demand. Counselling for children and their caregivers focus on ways to help improve an individual's self-image or self.
- Assisted play is an essential component of psychosocial care for the children. The social worker and counsellor observe the children’s play in order to identify children, who show little play, isolated play, repetitive behaviours and aggressive play, as these behaviours are indicators for impaired child mental wellbeing (Chazan & Cohen, 2010; Christian, Russ, & Short, 2011; Lous et al.,2002).
- In daily play sessions, guided by our psychosocial staff, vulnerable children are assisted in their play, according to their needs. Music therapy is provided weekly including rhythmic exercises, relaxation and singing. The children and even their caregivers join in and love the singing.
Social Care and spiritual care
Especially for vulnerable and poor families from rural areas, the diagnosis of a life–limiting disease is associated with high social and economic strain. The most common social challenges associated with their child’s cancer are logistic issues, transport costs and general economic strain, followed by a confrontation with stigma and myths around childhood cancer.
- The hostel staff provides a tailored approach to our patients and their families. After the initial referral from UCI, follow-up interviews with our clients are conducted to reassess their social needs.
- All patients and their caregivers are provided with accommodation, 3 meals a day, and transport to and from the hospital during the child’s treatment.
- Covered are also the costs for secondary prescriptions by UCI.
- Legal assistance is offered through a referral system with Uganda Network on Law, Ethics and HIV/AIDS (UGANET).
- Follow – Up calls are made to remind families between treatment cycles or investigations at UCI, about their next appointments. Any issues about continuing the treatment are discussed and where possible resolved.
- Informative sessions are held to discuss the facts about cancer and to break the misconceptions and myths about the illness. Caregivers are coached on how to facilitate this information to relatives and community members.
Through our psychosocial care, we also try to generate hope and provide spiritual support to the children and their families. Spiritual themes are incorporated into music therapy and readings with the children. All religious groups are able to pray at the hostel.
Our Background
It is a well-respected organisation throughout the local communities and within the health industry.
In Uganda it is estimated that 7,000 children are affected by cancer annually according to the medical registry in the Uganda Cancer Institute (UCI). Of these children 55% survive annually and yet in developed countries more than 80% of children are cured. This calls for a combined effort towards reducing the impact of cancer in children in Uganda.
Many of the families from rural areas who are poor and disadvantaged find it difficult to complete the treatment for their children with cancer due to the high cost involved for treatment, travel, food and shortage of beds at the hospital leading patients to sleep on verandas or in tents.
In 2016 KHC opened the New Hope Children’s hostel to provide these children who are diagnosed with cancer a secure and safe home environment whilst they undergo their treatment at Uganda Cancer Institute (UCI) at Mulago National Referral Hospital Kampala.
Who we are
The specialist care provided to the patient and their families staying at New Hope Children’s hostel is provided by the Paediatric oncology ward at the UCI in Kampala. Children are referred to our hostel by UCI.
Our Core Values:-
1. Compassionate Care
2. Honesty & integrity
3. Accountability & transparency
4. Non-discrimination
5. Excellence and Respect
6. Empowering & Developing
Late Dr. Samuel Guma
He has extensive experience in providing holistic care for people with HIV/AIDS and or cancer; training health workers in comprehensive HIV care and palliative care; and treating patients with antiretroviral therapy.
Dr Guma is recognised as an expert in Palliative Care and he has presented at international conferences on this topic. He previously served as a Board Member of Palliative Care Association in Uganda and is currently Vice-chairperson of the Uganda Cancer Society.
Bring in those skills, love, experiences and enthusiasm.
The volunteer places in the New Hope Children’s hostel are matched with the needs of the hostel as we are mindful of the children's privacy during this difficult time of their treatment.
If you wish to volunteer we would love to hear from you. Please contact us as we are sure you will have a rewarding experience.