A recent report commissioned by the United Nations Children’s Fund (UNICEF) in collaboration with the International Children’s Palliative Care Network (ICPCN) indicates that the number of children accessing palliative care in Kenya is less than 1% of the estimated figures.

The report titled Assessment of the Need for Palliative Care for Children indicates that the number of children in need of generalised palliative care is 680,717 whilst those in need of specialised palliative care are estimated at 264,102.

A model used by the authors shows that the average daily estimates of children in need of specialized palliative care is 72,357.

The total number of children that received palliative care services from hospice and palliative care organisations in Kenya in 2012 was 545 which is less than 1% of those in need of specialised services.

The main contributor to the estimated burden according to the report is cardiovascular disease, which is estimated to be about 42% of the broader need. Its contribution to the specialized need was noted to be somewhat similar.

The collective contribution of all progressive non-malignant diseases, including cardiovascular, is very high at about 75% for the generalised palliative care.

When compared to the estimated need for children’s palliative care in the United Kingdom, the rates of need are 3.75 higher in Kenya

In Kenya, all paediatric cancers were reported to be contributing to the palliative care burden although some were noted to be more common than others and these include the blood tumors, lymphomas and leukemia.

Interviewed palliative care workers felt that a lot of children are in need of palliative care services due to, in addition to HIV and cancer, conditions that included cardiovascular diseases, congenital malformations, cerebral palsy and sickle cell anaemia. The latter was reported to be highly prevalent in the western districts of Kenya.

Despite recent improvements in ART coverage in Kenya, the research indicates that a significant number of the children living with HIV are not on ART.

According to a UNICEF child rights and equity report, the ART coverage amongst children aged 0-14 years in Kenya was estimated at 31% in 2011.

Interviewed practitioners felt that whilst the definition for children’s palliative care provides the general description of the approach, the need exists for a more precise targeting framework which relates the intensity, duration and the package of care to the condition and stage of illness. One such example being the ‘emergency palliative care’ needed for those children suffering from trauma and in a critical condition.

The report further indicates that palliative care response has traditionally been provided by hospice and palliative care organisations which are predominantly Non Governmental Organisations (NGOs) registered as charity and welfare organisations.

In Kenya the main actors in addressing the palliative care needs within the communities have traditionally been private organisations, mostly NGOs, who have been working at the community level under the guidance and leadership of the Kenyan Hospice and Palliative Care Association (KEHPCA).

The national hospice and palliative care association has been working closely with the line ministries in Kenya to integrate palliative care into the health systems and policies.

Though the Community Health Worker (CHW) or Home Based Care (HBC) component of the primary care approach is present, some key informants in the public sector felt that the cadre was largely inactive due in part to the lack of direct support for their activities.

In the past year, the Kenya Ministry of Health, with support from KEHPCA, has embarked on strengthening the integration of palliative care into the health system.

KEHPCA, through its partnership with The Diana, Princess of Wales Memorial Fund and True Colours Trust under the Waterloo Coalition is providing technical and funding support to the Ministry for the establishment of Palliative Care Units (PCUs) at Level 4 and 5 hospitals in the country.

The project is specifically targeting the establishment of 11 PCUs, which are anticipated to benefit 4,000 new adult cancer patients, 5,000 adult people living with HIV and AIDS (PLWHIV), 500 new paediatric cancer patients and 1,000 children living with HIV receiving quality holistic care from within the units per year.

These units were set up to further the training of doctors, nurses and palliative care practitioners in Children’s Palliative Care (CPC) during the 2nd half of 2012.

The strategy in the medium term is to have the established PCU’s at the hospitals working in partnership with hospices in their catchment areas to provide support and mentorship to 30 lower level hospitals.

The report identified the following gaps in CPC services;

  • Policy and Strategic Framework; no stand-alone palliative care policies
  • Financing of CPC Services
  • Referrals
  • Capacity of service providers to absorb the demand for their services
  • Lack of Demand Creation Initiatives
  • CPC Medications and Materials

The report’s recommendations include;

  • Provision of palliative care for children integration into the public health system will be essential to bridge the gap
  • Need to increase training of health workers in children’s palliative care.
  • Health providers to include “demand creation” activities as part of their programmes primarily focusing on raising awareness and the training of community organisations to ensure the population is aware of the availability of children’s palliative care services and where these can be found.
  • Prioritize children’s palliative care on the development agenda by funders. Palliative care plays a significant role in addressing the global development goals on HIV and AIDS, Child Health and Maternal Health.

Full Report in PDF

The authors of the report/Principal Investigators of the study conducted in three countries (Kenya, Zimbabwe and South Africa) are Stephen R. Connor, PhD, Principal Investigator and Chenjerai Sisimayi, MSc, Co-Investigator.

The study was done in partnership with the three national palliative care associations and their respective co-investigators.

Eunice Garanganga, Zimbabwe Co-investigator – Hospice and Palliative Care Association of Zimbabwe (HOSPAZ)

Barbara Ikin, South African Co-Investigator – Hospice and Palliative Care Association of South Africa (HPCA)

Zipporah Ali, MD, Kenya Co-Investigator – Kenyan Hospice and Palliative Care Association (KEHPCA)

This study was funded through the following organizations; UNICEF, ICPCN, True Colours Trust and The Diana Princess of Wales Memorial Fund.