How Community-Led Caregiving Is Transforming Healthcare

Changemaker Health Series — Essay №3

Megan Strickland

Published in

Changemakers

10 min readJan 27, 2017

Authored by Ben Losman

Editing and contributions by Megan Strickland, Sarah Jefferson, and Yeleka Barrett

India’s healthcare system is focused almost exclusively on curative medicine. Within this framework, palliative care — which improves quality of life through pain management and other therapies — is regarded as non-essential. Few medical professionals are trained in palliative medicine, and most medical institutions do not provide it. As a result, adequate palliative care is accessible to a mere 2 per cent of the population.

As an anesthesiologist in Kerala, Dr. Suresh Kumar witnessed the limitations of the existing healthcare system. He watched patients suffer from pain that was entirely treatable. Suresh realized that moving palliative care out of the hospital and into the community could make treatment exponentially more accessible.

Suresh pioneered an approach that transforms neighborhoods into providers of integrated, collaborative caregiving. His organization, the Institute for Palliative Medicine (IPM), trains local citizen volunteers — from rickshaw drivers to bankers — to run neighborhood centers that deliver home-based palliative care to their fellow community members. Volunteers deliver non-medical care — in addition to assisting patients with practical tasks related to nutrition and transportation, they provide vital emotional support. Medical assistance comes from the dozens of doctors and nurses employed by the IPM network on an as-needed basis.

Engaging citizen volunteers to provide non-medical care, and moving this care into the home, relieves the financial burden on both patients and the healthcare system. In fact, most IPM patients pay nothing. And IPM’s model enables tremendous scale: the network of 10,000 volunteers serves 2,500 patients every week. The approach has proven so effective that the government of Kerala used it to create its Community Based Palliative Care policy.

IPM enables citizens to pursue wellbeing on their own terms, making it a prime example of changemaker health in action. By transforming this pursuit into a community-driven effort, IPM has made palliative care more affordable, accessible, and compassionate.

Community is a tremendous asset in advancing changemaker health. Like Suresh Kumar, social entrepreneurs around the world are fostering “communities of care” — spaces in which healthcare professionals and regular citizens come together to protect community health.

Caregiving through the lens of changemaker health

Caregiving is the intimate act of protecting another person’s wellbeing. Whether working in a nursing home or within a family’s home, caregivers help with everything from bathing, feeding, and administering medication to providing emotional and spiritual support. Caregivers sustain and enrich life, especially for those in need of regular assistance.

Formal caregivers — such as nurses, health coaches, and domestic workers — are trained and paid for their services. Informal caregivers provide care to loved ones and fellow community members, often without pay or training. In many countries, the number of informal caregivers comprises a major percentage of the population: for example, almost half of all Canadians above the age of 15 have provided unpaid, informal care to a family member or friend.

Globally, we rely on both formal and informal caregivers to help people live comfortable, dignified lives. And between aging populations, accelerating rates of chronic disease, and skyrocketing healthcare costs, the need for accessible and affordable caregiving is becoming all the more urgent.

Community-led caregiving helps to meet these needs by building communities of care, where networks of formal and informal caregivers work in concert to serve those in need. The “community” might be a physical place, such as a neighborhood, or it might be an online space where people share resources and support. Whatever form it takes, a community of care brings people together to build a culture of wellbeing that spreads beyond hospital walls.

Community-led caregiving does not replace formal healthcare systems — it augments them. The goal is to expand access to healthcare services in ways that are participatory and democratic, enabling regular people to become active participants in protecting and promoting community health.

How do social entrepreneurs build communities of care? We have examined changemaker health projects around the world, and these best practices have emerged:

1. Value the work of caregiving, both formal and informal

Globally, professional caregivers often face draining, demanding, and precarious working conditions. For example, many nursing assistants in private U.S. nursing homes work grueling hours for poverty-level wages. In Germany, as in many other countries, foreign nurses are underpaid, locked into unfair contracts, and punished for taking sick leave.

The situation for informal caregivers can be equally dire. In the U.S., most are working other jobs; many are struggling to make ends meet. The stress of balancing care, career, and other responsibilities often leads to depression, anxiety, and additional mental health challenges.

Why do we treat caregivers as if they don’t matter? In patriarchal societies, care is often considered to be women’s work; it is one of many obligations that wives, mothers, and daughters are expected to perform without complaining or support. In the U.S., structural sexism intersects with racism and classism to push poor women of color into high-stress, low-pay caregiving jobs. Abby Marquand, director of policy research at Paraprofessional Healthcare Institute, explains that “A marginalized group of people has always been doing this work [so] there’s been less [perceived] urgency around improving job quality.”

When caregivers are at risk, they are not the only ones impacted; the people who depend on their care may also suffer. To ensure this does not happen, social entrepreneur Gernot Jochum-Müller developed a model that values the work of informal caregivers through in-kind compensation. Through his organization, ALLMENDA, Gernot has adapted the concept of time banking to elder care in Switzerland and Austria. ALLMENDA recruits retirees to assist elderly people with their non-medical needs. “Time givers” bank their caregiving hours in a “time account” that can be cashed in when they themselves might require care. Through this “time pension” system, an economy based on the value of caregiving emerges. Time givers are able to improve the lives of the people they serve as well as invest in their own future wellbeing.

In the U.S., social entrepreneur Ai-Jen Poo is fighting to protect the rights of domestic caregivers. As the founder of the National Domestic Workers Alliance and its new initiative, Caring Across Generations, Ai-Jen is helping to foster a vibrant caregivers’ labor movement. Not only does it advocate for policy change — including a living wage for caregivers and equitable access to care for all — Caring Across Generations works with the entertainment industry to tell stories around aging, caregiving, and intergenerational connection. This multi-pronged effort is a vital force for protecting caregiver wellbeing through the valuing of their labor.

When caregivers receive the recognition and compensation they deserve, communities of care are able to flourish.

2. Equip caregivers with critical skills and resources

More than half of the 43.5 million people who provided unpaid care in the U.S. in 2015 performed medical and nursing tasks. Only 14 per cent did so with any prior training or preparation; 42 per cent had no training whatsoever. This means that millions of untrained people were performing tasks with potentially life-or-death consequences, guided by little more than intuition.

Home-based professional care in the U.S. — even for just a few hours a week — can cost tens of thousands of dollars per year, making it inaccessible to most people. As the number of people who need formal care but cannot afford it increases, we will see even more untrained people performing medical services.

Knowing this, informal caregivers must be equipped with the skills, training, and support they need to deliver outstanding care. Communities of care can thrive and grow when caregivers are confident in their abilities to provide both medical and non-medical assistance.

Social entrepreneur Francesca Fedeli does this through her organization Fight the Stroke (FTS). Francesca has developed a holistic approach to dealing with pediatric stroke that puts families at the centre of the rehabilitation process, educating them about pediatric stroke and training them to take the lead in their child’s recovery. At home, children play movement-based video games developed by FTS that are designed to improve locomotive skills and repair the brain. By centering the recovery process in the home rather than the hospital, rehabilitation becomes a family effort. And Francesca extends the process beyond the individual family: children can play these games via Skype with other families around the world.

At the core of the FTS approach is empathy. Indeed, research has shown that when family members act as caregivers for young survivors of stroke, the bonds of familial empathy accelerate rehabilitation significantly. What’s more, these bonds extend beyond the individual family and across FTS families worldwide — transforming what used to be an isolating diagnosis into membership in a vibrant global community.

3. Transform traditional service provider roles into community caregiver roles

In Ontario, Canada, an estimated 18,000 homeless and transitionally-housed people own pets. As a young veterinarian studying pet ownership among people who are homeless, social entrepreneur Michelle Lem observed a prevailing philosophy known as “pet before self.” Lem witnessed countless pet owners sacrifice stable housing, healthcare, and other services so that they could continue to be with and care for their animals.

This level of devotion presented a critical opportunity — by transforming the vet clinic into a site of comprehensive care for both pet and owner, Michelle could help eliminate the barriers between people who are homeless and their wellbeing, and nurture a community of care.

The result is Community Veterinary Outreach (CVO), an organization that equips veterinarians to run mobile clinics for homeless pet owners across Ontario. In addition to providing free veterinary services, vets also help connect pet owners to essential medical, housing, and social services. By making it possible for people who are experiencing homelessness to seek services for themselves as well as their pets in the same location, and by equipping vets to serve both these needs, CVO creates an integrated community of care.

By following CVO’s lead and transforming traditional service provider roles into community caregiving roles, care becomes more deeply rooted in the diverse medical and non-medical needs and realities of all community members.

4. Use community to celebrate identity

In the U.S., women of color — particularly African American women and other women within the Black diaspora — are almost four times more likely to die in childbirth than white women. This staggering figure is just one of countless statistics that reveal a fundamental disparity in the availability of quality healthcare for marginalized communities.

Social entrepreneur Kathryn Hall-Trujillo founded the Birthing Project to ensure that all women, especially women of color within predominantly Black communities, receive the care and support they need to have healthy, happy pregnancies. Crucially, under the Birthing Project model, this support comes from other women of color (mentors known as SisterFriends) with similar cultural experiences. Together, the expecting mother and her SisterFriend attend doctor’s appointments, enroll in parenting classes, and identify other resources in areas such as housing and income. After the baby is born, the support continues until the child’s first birthday.

As The Birthing Project demonstrates, for a community of care to meet the needs of all of its members, it is vital for people from marginalized groups to be included in leadership roles. The relationship between the expecting mother and her SisterFriend is about more than keeping appointments and accessing services. On a deeper level, the Birthing Project “helps [participants] remember that they are part of a community that cares for them.” For expecting mothers, this is a fundamental affirmation of identity, and it provides a tremendous amount of validation and support. To date, more than 10,000 babies have been born into Birthing Project Communities.

The Birthing Project demonstrates that affirming the identities of people who are part of a marginalized group, and putting them into positions of leadership, is essential to creating an equitable community of care because it works to address the systems of oppression that deem certain groups to be less worthy of quality healthcare.

Communities and empathy

In analyzing these entrepreneurial strategies for cultivating communities of care, a pattern emerges. The immediate impact of community-led caregiving is that comprehensive and dignified care becomes accessible, affordable, and available to everyone who needs it.

But the impact goes even deeper. Suresh Kumar, founder of the Institute for Palliative Medicine, describes caregiving as a personally transformative act. As a caregiver, “you cannot be compassionate just toward” the people you serve; caregiving inevitably makes you “compassionate toward your neighbor.” This, in turn, fosters a worldview built upon compassion toward all of humanity. When an entire community embraces the service of caregiving, it becomes a source of limitless compassion. In other words, community-led caregiving breeds empathy.

Empathy is fundamental to changemaking and innovation. The ability to understand the world from our neighbor’s perspective drives us to create a world that is fair, just, and kind. Therefore, the impact of community-led caregiving ripples far beyond the realm of healthcare. When communities practice care, they become capable of changing society.

What do you think could be possible if individuals, communities, and traditional medical industry stakeholders could work together to scale empathy-driven community care across society?

Ashoka is a global network of leading social entrepreneurs — individuals who tackle society’s complex social problems with scalable, innovative solutions. Launched in 2010 by Ashoka and the global healthcare company Boehringer Ingelheim, the Making More Health (MMH) initiative identifies, supports, and scales innovative, entrepreneurial solutions to global health challenges. To date, the MMH initiative has identified and supported 80 social entrepreneurs in the field of healthcare from across 47 countries. This article series synthesizes the emerging patterns and insights of the MMH network, as well as other social entrepreneurs working in healthcare, in order to explore the theme of changemaker health.