KICOSHEP – taking palliative care to the community

Categories: Community Engagement.

Kibera Integrated Community Self-Help Program (KICOSHEP) is reducing the gap in palliative care provision in Kenya by providing support at the community level.

KICOSHEP is a community-based NGO offering end of life support to many at the lowest possible level of social welfare in Nairobi’s slum areas and beyond.

Started as a volunteer care centre, the organization has seen patients receive much needed support at the end of their lives, a service yet to reach many with life limiting illnesses.

Reverend Ann Owiti, founder and director of KICOSHEP, spoke to ehospice about the work of the organisation. She said: “We offer level one service at the community where we train the community to understand basic care, how and where to access it.”

As well as taking care of patients with life limiting illnesses, KICOSHEP helps their family to cope with the situation at hand. They also offer tests for HIV as well as other minor tests in their small laboratory.

The organization links patients to other facilities for management if it is not in a position to handle their illnesses, especially at advanced stages.

Patients commonly seen include those ailing from diabetes, HIV, cancer, cardiovascular diseases and even malaria. They are referred from support groups dealing with cancer, HIV and other diagnoses.

“Since we are taking care of patients with HIV and AIDS, most of them have developed other life limiting illnesses, especially cancer with cases of breast cancer, cancer of the oesophagus and prostate cancer being the most common, ” said Rev. Owiti.

The organization also offers home care. Rev. Owiti clarified: “People with chronic illnesses die in pain but we educate them on palliative care. We manage pain at the community level to minimize time spent for the patient to visit a hospital.”

KICOSHEP programs officer, Ms. Sophie Donde, told ehospice that the organization has trained the community health care workers to manage pain so that they are able to know what pain the patient is suffering from using the ten point pain scale.

“This has enabled most of them know how to administer some pain management drugs in relation to the pain the patient is suffering from,” she said. She added that training has also been done in wound management so that patients can receive such service at the community level.

Though expensive, Rev. Owiti said the organization purchases morphine directly for their patients though some, who are referred to them from other facilities, come with morphine and their duty to such patients is to administer it in the right dosage.

KICOSHEP initially received training in palliative from Kenya Hospices and Palliative Care Association (KEHPCA). KEHPCA has, over the years, trained many organizations and individuals to provide health care in the community. Some of those trained are patients who are stable enough to support other very ill patients.

KICOSHEP has conducted a study with help from the Altarum Institute in America, establishing that most of their patients are in need of palliative care, as most of them are diagnosed with cancer at late stages. “Through palliative care, the patient’s pain is managed and the family members have room to breathe and make other life accomplishments as less care is needed for this patient,” Rev. Owiti said.

She added that family members and relatives cry most times during the patient’s illness and they cannot sleep as the patient agonizes in pain throughout the day and night. Sometimes the family gets tired and KICOSHEP aims to help relieve burnout suffered by such family members and relatives while taking care of the patient.

“We respect patient and family privacy at all times and we always offer advice on their social welfare,” said Rev. Owiti. “Our wish is that that everyone in need of palliative care accesses it without leaving a single person out.”

If community based organizations involved in end of life care are well funded, the financial burden on the side of the patient will reduce as there will be less frequent hospital admissions, giving a family space to progress in life.

KICOSHEP covers most regions in Nairobi. Their patients come from areas such as Kayole, Karen and Komaroks, among others, as well as from slums where the program was initially designed to offer community based care including Kibera, Southland, FuataNyayo and Embakasi.

Currently KICOSHEP is working with 120 community health care workers who help by referring patients to facilities close to where they stay. Outside of Nairobi, the organisation works with 18 government health centres in Kisumu, while in Malaba, Western Kenya, they work with four facilities. In Eastern Province they work with the Provincial General Hospital.

KICOSHEP developed a community mobilization strategy and the Ministry of Health works with the organization to understand the health status at the community level.

On a yearly basis, the organization is able to attend to 12000 clients. “We do not go to the community as a foreign entity but we have made them understand that we are part of that community, making it easy to relate and share freely. With palliative care, we say we give decent care and that a patient should have a voice. Our patients are given a chance to choose who to care for them,” said Rev. Owiti.

KICOSHEP also offers spiritual care. The organization has a holistic approach to care and they help the patient to choose how they desire to depart from the world.

Rev Owiti said: “I am a trained theologian and I find this to be my role. It gives me the opportunity to invite priests to visit patients at home and I tell the priest to encourage them, comfort the family and discuss with them the way forward.”

She said that they take patients and their families through acceptance since most families tend to hold on despite the patient being at a terminal stage where some throw themselves into financial oblivion by selling land to get money in an effort to find cure for the patient.

According to Rev. Owiti, most people in the community have health problems and there needs to be a clear plan to handle these issues. Majority of the people lack knowledge on their illnesses, and most walk to health care facilities as they lack the income to afford transport.

“We have an open line for patients to call us and we have someone on call every week. As an organization, we practice urgency and we do not postpone seeing a patient as requested,” said Rev. Owiti. She added that the person on call tries to get to the patient soonest possible to meet their needs and those of the family.

If a patient is referred to KICOSHEP from another health facility and home care is recommended, the organization will take up the challenge of following them up and in case the family is not ready to have them at home, the inpatient facility is ready to host them as the family prepares to take care of this patient from home with assurance of possible support from the organization.

Within the community groups, KICOSHEP trains members on income generation activities to boost their financial welfare. The organization also works with teachers to help in assisting children with HIV/AIDS, especially in drug administration.

The organisation has 20 community based groups working on the management of HIV alongside a grandmother’s group taking care of orphaned children in Machakos.

In addition, KICOSHEP works with commercial sex workers in Malaba, Mlolongo and Kibera slums where they assist them to improve their livelihood, adherence and compliance to medication regimes, as some of them have been diagnosed with cancer of the cervix. “They are educated on how to protect themselves and link them to facilities where they can be tested for sexually related ailments,” added Rev Owiti.

Ms. Pamela Anyango is one of the community health care workers working closely with KICOSHEP to identify patients and refer them to facilities for appropriate help.

“I have worked for 10 years and I have assisted many. Some patients who were bedridden have grown strong enough to work but some have passed on,” said Ms. Anyango.

She said that most patients hide themselves but once the community health care workers talk to them, they come out for testing and receive help from KICOSHEP.

Continued support for these groups, including voicing their work through various platforms, would boost their success in their endeavour to reach more patients with life limiting illnesses and manage of their symptoms.