Home-based care is the provision of health care services to supplement formal health systems. Carers, often working on a voluntary basis, reach people with compassionate and holistic support where they feel safest — in their homes and communities.

Organizations that provide home-based care serve people who are often missed by under-resourced national health systems. In 13 of the 15 countries where the SLF works, there are fewer than three doctors for every 10,000 people, well below the global average.

Stigma, discrimination, isolation, and poverty also create common barriers to health care access. More than just the provision of medicine, home-based care creates human connections that drive the transformative power of community responses to HIV and AIDS.

Widespread access to HIV treatment is the great success story of the global response to HIV and AIDS and it has radically transformed the pandemic. Forty years into the AIDS crisis, the primary challenge for community-based organizations has evolved from providing dignity and comfort in death to supporting people who live with HIV to thrive, while also dismantling the systems of inequality that continue to make people vulnerable.

However, while global funding has succeeded in getting HIV treatment as far as government-sponsored health centres, rural communities and marginalized groups are often overlooked. Medical responses to HIV also pay little attention to the range of social, emotional, psychological, and spiritual effects of the illness. As a result, home-based care has expanded beyond the home to create far-reaching community support systems and bridge the gaps.

Overcoming obstacles to HIV treatment

Home-based carers play a critical role in getting people onto HIV treatment, supporting adherence, and tracking progress. Many carers deliver medication to clients, check viral loads — the amount of detectable HIV in a client’s blood — and reach out to their close contacts for HIV testing and counselling.

However, access to medicine is not enough to ensure adherence as people living with HIV face many obstacles to treatment. When caregivers visit people in their homes, they have an opportunity to identify barriers. A grandmother caring for grandchildren, for example, might share her food insecurity, or a child’s refusal to accept a positive diagnosis.

The path to working in home-based care often begins with receiving support from community-based organizations. With first-hand experience of its impact, home-based care volunteers are trained to deliver skilled care themselves.

Many say they feel home-based care work is their calling. The majority are women and many are living with HIV. They become highly skilled and respected in their communities and bring a deep connection and commitment to every client’s home.

With time, they grow into change-makers, advocates for health and human rights and leaders in their communities.

Meet these community health care leaders

Grace and Valerie

Anna Namasiku Ndunda

Wairimu Mungai

Equitable pay is a human right. But, despite its skilled and critical nature, home-based care is rarely paid at all. Globally, caregiving labour is undervalued — generally considered “women’s work.” In fact, the majority of SLF partners are forced to rely on volunteers, and many workers need to participate in income-generating projects while maintaining their own households and fulfilling their role in community care.

Gender equality and unpaid labour

Paying women for their work contributes to gender equality and builds healthy, resilient communities. Unpaid work by women and girls leaves less time for education, employment, civic and political engagement, and leisure.

As one home-based care volunteer explained, over time “you become a friend” and confidant. Home-based care workers bring emotional intelligence to their work — human touch, listening, empathy, and personal connection. The most effective home-based care workers build trust with whole families. With intimate understanding of a family’s experiences, caregivers can tailor strategies for support and treat individuals in culturally appropriate ways.

SLF partners have deep connections to their communities and have earned the trust over time — a significant factor in their success.

Overcoming stigma and discrimination

Historically, people living with HIV, LGBTIQ communities, sex workers, and ethnic and linguistic minorities have been dangerously excluded from mainstream health care. They continue to be poorly served and often encounter harmful discrimination from staff.

Home-based caregivers break down HIV stigma through a willingness to work in close physical and emotional contact with their clients. Over time, they counsel families to build mutual understanding, acceptance, and support. When clients feel closer to their families and communities, many ultimately become care workers themselves.

Description: Through workshops and role play, Maasai Women Development Organization (MWEDO) in Tanzania trains community members to become Traditional Birth Attendants. As volunteer care workers, they provide support during and after birth and refer women to clinics and hospitals when needed.

Location: Tanzania

Credit: Photo by Alexis MacDonald/SLF

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“Maasai people have experienced discrimination in government services, with health providers not speaking their language ... MWEDO medical facility, in contrast, is welcoming. There are no language barriers between the carers and their clients, as well as our other staff, and there’s a friendliness, warmth and welcome in our approach that makes our services work so effectively. Hospital personnel usually chase away the Maasai’s traditional birth attendant when they bring women in to give birth at health facilities. But MWEDO sees the traditional birth attendants as important players in caring for people, and our home-based carers work closely with them and value their contribution.”

Linking to community care

Home-based care is often an entry point to a larger network of support. Home-based caregivers might connect clients with direct food support or teach them to grow their own vegetables or raise animals. To ease economic strain, carers connect clients and their families to other income generation programs and training opportunities.

Home-based care can also be a first step toward starting HIV treatment. Home-based care workers can connect them with peer support programs to encourage them along the way.

“A lot of our beneficiaries complain about being unable to keep on their treatment due to insufficient food or unbalanced food. The team trains the family on how to improve food security for the home, and in many cases food parcels are also delivered. In every home visit that we carry out, the team will monitor the progress of those who are taking ARV medication. They look at their viral loads (based on the feedback we get from the hospitals), their physical health and appearance, their spiritual health, and their emotional and psychological well-being — and they help them to get extra professional support where they see it is needed to keep the person on treatment.”

Creating partnerships with local government

Community-based organizations play an absolutely critical role in creating continuous chains of care.

They connect people in remote and rural communities with services provided by community-based organizations, and with medical assistance from government-sponsored health facilities. “We work as partners with each other,” says mothers2mothers International (m2m) in Lesotho.

Home-based care doesn’t replace the need for a doctor or nurse, but complements it. Clients have significantly improved chances of staying on treatment when they’re connected to formal health care as well as a supportive local organization. While some community-based organizations continue to struggle for meaningful recognition, many are increasingly seen as key partners to governments for HIV treatment and adherence.

“There is no gap between the clinics, the hospitals and us.”

While community-based care has always been a lifeline for people affected by HIV and AIDS, the world now sees its value and vast potential through COVID-19.

When the COVID-19 pandemic dangerously disrupted HIV services, community-based organizations took swift action. Home-based care workers courageously stepped up to strengthen national pandemic responses. They expertly navigated lockdowns to reach clients in new ways, and received international recognition for their invaluable expertise.

Worldwide, the pressure of COVID-19 continues to expose entrenched inequities, including violence against women and girls and discrimination against LGBTIQ communities and sex workers. Increased food and income insecurity, disruptions to lifesaving HIV medications and treatment, and inequitable global access to COVID-19 vaccines threaten decades of progress on the AIDS pandemic.

Despite the ongoing potential for COVID-19 to devastate communities affected by HIV and AIDS, early reports show hopeful results. As reported by UNAIDS, there was an increase in new transmissions and AIDS-related deaths, but not as dire as originally feared. Community-based care is at the heart of this relative success. With decades of experience responding to pandemics, they stretched already limited resources, and adapted to the new reality of dual pandemics.

Prioritizing — and funding — community-based care is the best way to safeguard against future pandemics.

Community-based organizations, including SLF partners, need flexible and reliable funding to scale up proven interventions, close service gaps, and extend their reach. Collaboration between government-run health systems and community-based care is key to hitting ambitious global targets for HIV and AIDS by 2025.

Globally, funding for HIV and AIDS has greatly diminished. Where funding does exist, it rarely goes where it will have greatest impact: to community-based organizations. When they do get funding, it’s often with restrictions, which in turn hampers how effective it can be.

With limited economic resources, organizations that are run for and by community members feel the effects of national and global crises most acutely, yet continue to invest in the people around them who need it most. They do not do this alone. They work collaboratively with national governments, networks, and international development actors as an integral (even while undervalued) part of the health system tapestry.

SLF funding for community-based organizations is sustained, flexible, and responsive to the actual needs of the community. It’s a funding model that works. Funders at all levels can show leadership in global health by investing in community-based organizations that provide home-based care. They deserve recognition, respect, and resources that match their demonstrated value.

We hope this report — Healing, Health, and Hope — galvanizes the will of national governments and funders at all levels to demonstrate leadership in this key area of global health, increase support for community-based organizations, and make significant new investments in home-based care.