Using the toolkit
All reported that the palliative care toolkit have been really useful in their continuing work, increasing confidence and communication skills of community health workers by:
- teaching them about palliative care in a simple and understandable way
- acting as a point of reference for them long after undergoing the initial training.
It continues to be used as a resource for ongoing training as highlighted by one of the trainers from Muheza Hospice Care:
“[The toolkit] provided the basis for our teaching and that delivered by the local health workers whom we were mentoring. Without it we would have been completely lost and would not have known where to start the work; as it was we had something to offer from the start.”
An unexpected benefit from running the training is that it led to
changes in palliative care provision with new ways of working and services being developed in many areas.
Many of the community health workers attending the training courses had limited knowledge of palliative care previously. The training combined with having the toolkit for reference, has given them the confidence to provide palliative care and support to patients with a life limiting illness and their families.
As Anne Owiti, director of a community based project caring for people living with HIV/AIDS in the slum areas of Nairobi said:
“The training has really made a difference in the care we provide to our patients. It has empowered my nurses and community health workers to deal holistically with patients; they are able to asses and treat pain or refer to Nairobi Hospice for further management.
They are also able to talk to their patients about their illnesses and plan treatment with the patient and family involvement. Patients are also being informed about palliative care and how it can improve their quality of life. My organisation feels empowered that it can actually provide palliative care now.”
Several participants reported an increased confidence when communicating difficult messages to patients and their families. For example one of the trainers at The Shepherds Hospice in Sierra Leone said about one participant:
“Her understanding of pain has made a good advocate of her. She is always requesting that truth be told to patients other than false promises of cure and recovery. She has counselled family members and patients to accept the diagnosis in order to facilitate coping.”
However, Muheza Hospice Care in Tanzania felt that the community health workers attending their training were reluctant to tell patients the truth about their situation. But if asked if they should always answer a patient’s questions truthfully, there was almost always full agreement.
Improved knowledge from using the palliative care toolkits led to changes in the way services are offered in many areas. This included:
- developing a multi-disciplinary approach to caring for patients and their families, referring to other services as necessary (Sierra Leone, Tanzania)
- starting a new palliative care unit in a public hospital in Kenya
- establishing a club providing therapeutic and psychosocial support through play, for children living with HIV in Tanzania
Several reported an increase in the prescription of opioids for pain control. There were three main reasons for this:
- relaxation of the policy on oral morphine (Tanzania)
- increased referrals to palliative care services (Kenya, Sierra Leone)
- improved knowledge about the safety of morphine for pain control when it is carefully prescribed and administered (Tanzania).
In addition, running the training often resulted in an increased interest in issues around palliative care. In Sierra Leone as a result of publicity about the training, four physicians working in public and private health services contacted the hospice to become involved in the pain task force. A major role of this task force is to advocate to managers and policy makers at a national level to increase the availability of opioids for the control of pain.
Further information
Find out more about the palliative care toolkit grants for healthcare organisations working in Sub Saharan Africa.
There was a second round of palliative care toolkit grants for community based healthcare organisations working in Latin America in 2010. This round of grants was to fund training workshops for health workers with little or no knowledge of palliative care.
