A seat at the table

Caregivers in Kenya come together to demand a voice

Photo: UN Women/Alex Kamweru

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“Caregivers strengthen the social fabric because for us…health begins in the community”

Violet Shivutse knows from experience that to advocate effectively women need to organize, define goals, and then insist on a place at the decision-making table.

A 47-year old farmer, Violet is the founder of Kenya’s branch of the Home-Based Care Alliance, which brings together around 30,000 caregivers across 11 African countries. The vast majority women, these carers collectively treat and care for around 200,000 friends, relatives and neighbours, many affected by HIV and AIDS.

“Our main goal … is to make sure we have a collective voice to lobby for recognition of caregivers as key players in healthcare provision and HIV and AIDS in our communities. Most of our caregivers have gone to a level where they are really recognized by senior government people” says Violet.

It hasn’t always been this way. Violet says it has been a long, hard struggle to get to this point. For years, caregivers received little or no recognition for the critical role they played in filling the gaps where formal healthcare facilities were lacking.

Violet with her colleagues at work
Photo: UN Women/Alex Kamweru

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Violet Sivutse speaks to the community in Kakamega, western Kenya
Photo: UN Women/Alex Kamweru

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The fact that Violet remains rooted in her community is key to her effectiveness

The story of Kenyan caregivers’ empowerment goes to the heart of some of the issues of exclusion that affect many facets of women’s lives around the world.

Working with small-scale farmers in western Kenya in the late 1990s, Violet saw that male farmers had the power to take out loans or benefit from agricultural extension schemes, while women were more likely to be found in the fields, working hard, with little support and no role in decision-making.

She also noticed that many women in her community were dying in childbirth, and that the response of the nearby hospital was to blame traditional birth attendants.

Shaken by the death of a local woman, Violet made contact with the local hospital and asked them to include traditional birth attendants in their outreach programmes instead of ostracizing them.

The hospital agreed to work with traditional birth attendants to facilitate mobile clinics for women in the villages. Since many of the attendants were illiterate, they were unable to fill out the hospital’s paperwork so Violet agreed to be their secretary.

It was the first step on a journey that would lead Violet to form the Shibuye Community Health Workers. Since the group’s inception, it has expanded its work to include other health issues such as measles outbreaks, diarrhoea, and providing advice on sanitation, good nutrition and family planning.

Then, as Kenya’s AIDS pandemic took grip in the mid-1990s, caregivers found themselves under increasing strain. In 1996, the country’s HIV prevalence rate hit 10.5 per cent and three years later HIV and AIDS was declared a national disaster and a public health emergency. Since the beginning of the crisis, Kenya’s caregivers have been on the frontline of the response - treating long-term patients at home, ensuring their fields were tended, tackling stigma and defending the land rights of women with HIV/AIDS.

Yet initially their efforts were barely acknowledged.

“Every time resources for HIV and AIDS came or meetings (were held) to discuss policy around HIV, caregivers were excluded or represented by big organizations,” Violet says.

Her epiphany came during a meeting in Nairobi in 2003 to discuss the effect of HIV and AIDS on Africa.

“The donors, the policy-makers in the room said: ‘we know caregivers are there but they are fragmented, they work in small groups so it becomes difficult to bring them to a decision-making platform because they can’t represent each other well,’” she said.

Violet relayed this to her community and set about creating a local chapter of the Home-based Care Alliance, which was already working on HIV and AIDS in other countries across Africa. The women organized and started talking to the authorities about how to refine policy around HIV and AIDS. One of the first meetings was with the Constituency AIDS Control Committee, part of the National AIDS Control Council.

As the Home-based Care Alliance grew, Violet realized there was a need to address some ingrained misconceptions about the nature of healthcare.

“The view was that health begins at the health facility. So we came in to say, health begins in the community.” She says the work the caregivers were doing on HIV and AIDS was an economic necessity, as they helped prop up a national health system under incredible strain, but it was also a moral and social imperative.

“Caregivers strengthen the social fabric because for us, in an African context, any sick person belongs to their community … It’s not just about health facilities that are collapsing. No. It’s actually what … people should do when people fall sick and have a long-term illness. We are not just responding to healthcare,” she said.

Today, the Kenyan branch of the Home-based Care Alliance has around 3,200 members. In recent years her advocacy work has focused on creating enabling relationships between communities and health facilities, helping caregivers organize and access resources and key policy-making forums.

For Violet, who often represents caregivers in global meetings, the fact that she remains rooted in her community is key to her effectiveness.

“I think this is a comprehensive, holistic way of doing development where you are not just handpicked to sit on a committee, but you come from a community,” she says.

Story: Clar Nichonghaile. For more information on Violet and her work, see