The African Palliative Care Association had an opportunity of visiting and interacting with a team of palliative care volunteers in Chibuto district, Gaza Province, in Mozambique. There are key lessons we can derive from their model of health service delivery.
These volunteers have received basic training to provide palliative care, including pain assessment from Mozambique Palliative Care Association (MOPCA) and Doulerus Sans Frontiers (DSF), also known as Pain Without Borders.
How it works
The community volunteers are organised in associations according to their villages. They have supervisors, all trained in palliative care. Of the 20 volunteers on ground, nine of them are receiving stipends in compensation of their time, although this poses a challenge for motivating others.
Some of the activities and services provided by these volunteers include:
- Supporting patients to get to the hospitals and to return home.
- Sensitising family carers on how to care for the patient.
- Providing support for treatment adherence and physical presence for the patient including stigma reduction.
- Providing basic counselling aimed at influencing individuals to seek HIV treatment.
- Establishing relationships with community leaders, working closely together to help patients get to hospitals.
The volunteers act as linkages between the patients and the hospitals, helping to convince those who fear to go to hospitals for various reasons to change their attitudes.
Because of the training received, volunteers felt confident to undertake these tasks. As Lidia, one of the volunteers noted:
“Now I know how to classify the level of pain using the pain ruler and know how to take care of palliative care patients. We also have a very good relationship with hospitals through our work with the hospital focal point person.”
During the training session, the volunteers shared some of the main challenges they face in the field. They noted that some patients are too sick to walk to the hospitals, which are sometimes too far, yet without transport to take them there. The bicycle ambulance does not work for very sick patients due to the rough roads, yet sometimes even these modes of transportation are unavailable and volunteers have to improvise by using wheelbarrows.
Areas of patient vulnerability
Volunteers noted that they come across patients who live alone without anyone taking responsibility for their care or accompanying them to the hospital. For children who live with only their fathers, care is limited. There are also children whose mothers do not know their fathers. Others are not breast fed due to the poor nutrition of their mothers.
Sometimes the volunteers work with community leaders to seek support from the Social Action Institution, although it takes a long time for them to obtain a response. Volunteers also reported having challenges with patients who return from the capital city (Maputo), or from South Africa and other distant regions with advanced disease, reporting to hospitals late in the trajectory of the disease and quickly passing away.
According to their experience, most patients who return to Mozambique from South Africa prefer to go to traditional healers first, before going to the hospitals, where they are not very cooperative with the health care system. They further noted that some patients need ARVs but have no food to enable them to consistently take their medication. Sometimes, they also meet couples where one of them is on treatment and the other is not.
Motivating factors for volunteers
The volunteers also shared their motivation to care for palliative care patients:
- Seeing patients recover from pain and suffering.
- Engaging families that take up their caring role as a result of advocacy efforts.
- Being warmly received by the families and patients who express gratitude.
Training traditional healers
MOPCA and DSF have also trained traditional healers to address some of these challenges. An APCA visit to one of the traditional healers (Eve), confirmed the usefulness of such training.
Eve noted that the training has helped her and other traditional healers to do their work better. They are able to undertake basic clinical assessments (which she also called visual assessment), followed by referrals to the hospital for relevant tests for HIV and sometimes cancer. She also convinces patients to remain on ARVs even when they are taking herbal medicine.
Eve also undertakes disease prevention precautions such as using gloves, which she obtains from the hospital during their joint meetings. She collaborates with the community volunteers on the ground, and is a trainer of aspiring traditional healers, with whom she shares the knowledge and skills obtained from her palliative care training.
“I do not do what I am not supposed to do. I got a patient last week with a problem in the private parts. I put him in my car and took him to hospital. I would like to sensitise other traditional healers in Africa so that they do the same as myself,” she said.
The True Colours Trust, through the African Palliative Care Association and DSF provided funding support for the training of community volunteers, traditional healers and some nurses in Chibuto hospital; with some of the trained nurses serving a supervisory role with the volunteers.
Strengthening the pain relief supply chain
A visit to the DSF Unit at the Chibuto Hospital indicated a need to build the capacity of the unit further in stocking, storing and using essential palliative care medicines, including morphine. The positive collaboration between this pain clinic and the Chibuto health centre provides an opportunity for strengthening its capacity to become a fully functioning pain and palliative care unit. The unit currently receives an average of 20 patients per month from the health centre and the community.
MOPCA, DSF and the Chibuto Health Services are determined to develop this district model for palliative care provision and have the relevant structures and collaborations in place. These include a pain clinic, community volunteers, traditional healers mostly catering to rural populations, supportive district leadership, MOPCA and the DSF partnership. However, they are constrained by resources that include expert staff in palliative care and finances to continue with this work.
APCA’s visit to some of the patients cared for by the trained volunteers showed that they are doing their best with the limited knowledge, skills and resources they have. What is very obvious is that their model of service provision can be improved by accessing expert support in pain and symptom control which is currently not readily accessible.