Atlas Caremaps & Equal Care. The role of care mapping.

From birth to death, we are always nested within various systems of care and support, both large and small. These systems are crucial for our well-being. While we may become more self-reliant as adults, these broader support systems remain essential. Even when we aren't actively giving or receiving care, we find comfort in knowing we are part of these often invisible networks. Given their importance to our health, well-being, and identity, you'd expect us to better understand their impact. However, many of us are not familiar with the idea of seeing ourselves as embedded in the care networks we create.

I only gained this perspective after attending a Care mapping session with Atlas of Care. Previously, I had discussed specific individuals I cared for and reflected on my relationships with them. Sometimes, I considered family or friendship groups. Still, I had never viewed these individuals, relationships, or groups as components of a larger system of care and support, as a whole. Since creating my first Care Map with members of the Clapton Care Circle and community partners, Care mapping has become a significant part of my personal and professional life, as well as my political activism. In this blog, I explain why.

Mapping personal care networks

The Atlas of Care offers a straightforward process for mapping your care networks. Start by listing the people you support, those who support them, and those who support you. Using pencil and paper with simple symbols you can create a visual representation of your care and support network. You can watch a video on how to draw a care map here.

Informal Care networks are complex living systems, so they can never be represented in their entirety. But we don’t need to make a comprehensive care map to learn something useful. Drawing key individuals in your support network, showing their connections and proximity to you, helps you understand how people influence each other. Even small changes can lead to positive outcomes for you and those who matter to you. These changes might involve:

• Making regular phone calls to someone supported by someone close to you.
• Informing someone that they are in your care map to make them aware of their significant role in others' lives.
• Asking for help more often instead of always offering to help.
• Spending more time with those who provide you with nourishment.
• Cultivating closer friendships with people who live nearby.
• Saying "no" to some people more often.

By examining your care map, you can see how these simple actions can profoundly impact both you and the people who matter most to you. Your care map often reinforces things you already knew were worth doing or avoiding. However, it's essential to recognize that care mapping also involves emotional work, as it can evoke feelings of guilt or motivation. For a video on using your care map click here.

My own care map often spells out the obvious. I see something that, deep down, I already knew would be something worth doing or not doing. My map spells out just how significant that small act is. Honestly, sometimes even this awareness doesn't motivate me. I've realized that feeling guilty about not doing something can make it even harder to do. This reveals a crucial aspect of care mapping: it involves emotional work.

Care mapping as emotional work

There is an invisible landscape of feelings and emotions unconsciously shaping the dynamics of your care relationships both positively and negatively. When we reflect on the people involved in giving and receiving care, it can bring up complex emotions like resentment, fear, anxiety, guilt, and even shame. Mapping who is present in a care map also highlights those who are absent, leading to feelings of loss and grief. Examining the flow of care in relationships can reveal inequalities in the distribution of caregiving responsibilities, bringing anger and resentment. Realizing how far some people are from us geographically can evoke sorrow or anxiety, especially if these are the individuals we feel closest to. These emotions serve a vital purpose by motivating us to address challenging situations and fulfill fundamental needs such as comfort, security, and belonging. However, our responses to these emotions are often influenced by unconscious beliefs, which can lead to behaviors that hinder these goals.

To navigate this emotional landscape effectively, care mapping should take place within relationships characterized by empathy, curiosity, and acceptance. Discussing these emotions with someone who doesn't judge you and is curious about your experiences is a crucial aspect of the care mapping process. Changing behavior in close relationships can be challenging, open discussions about the feelings, insights and actions you might take can make implementing change more manageable.

What your care map looks like, what you learn from it, the things you might want to do, and the reasons why you might not end up doing some of them! These are all very personal things. Care mapping, however, can also play a role in people’s professional lives.

Care mapping and team building

The Clapton Circle of Equal Care, is exploring the role Atlas care mapping can play in training team members in relationship-centred care, developing care plans and starting teams with our supported members. Care workers and circle members participating in our pilot project are taught care mapping. Drawing and reflecting on a care map can help people see the link between someone’s well-being and the quality of their relationships with the people, places and things that matter to them. From this relationship-centred stance, promoting well-being can be understood as enabling people to play meaningful roles within these care and kinship networks. This is rather different from the traditional view of care services, where promoting well-being is more likely to be seen in terms of staff delivering additional activities, outside of their conventional caregiving routines, to passive recipients of care. Our “Supportive Conversations” (or care planning) with the people we support begins with care mapping. Before focusing on people’s individual care needs and preferences, the people we support are given the opportunity to map their wider support networks. This, like all care maps, includes the people and places they support as well as the people and places that support them. This gives us an insight into the strengths, gifts and challenges of the systems they are already nested in. As part of someone’s care plan, a care map acts as a living map of someone’s well-being and belonging. See an example of how care mapping becomes team building below.

The care map can also help us to integrate our service into someone’s existing care and support networks. In Equal Care, the care of an individual in their own home is always done as part of a team. Whenever possible this team is made up of some of the key actors in someone’s care map. Looking at and talking about someone’s care map can help us identify the people and places that we can collaborate with to provide a more meaningful experience of care. Doing professional care, in conventional services, often ends up placing friends, family members, and neighbors at the periphery of the service, rather than making sure they remain central to it. In such services, care tasks will get done and someone's daily living needs maintained, however, in overlooking a person’s wider support system, this care can happen in a way that erodes their sense of belonging and identity.

Care mapping as a political practice

Finally, care mapping has a political dimension. We live in times when most people need to be in full-time work to sustain themselves, this will be the case in both one and two-parent households. Most people, therefore, don’t have a lot of time to care for people outside of their immediate nuclear family. Finding the time to care for a relative in need of a lot more care, can often involve making a great deal of sacrifices. People’s care needs are increasingly becoming a problem that we can’t solve without outsourcing a significant part of the care labour to professional providers. When this care is bought and sold on the market, the meaning of “Care” changes. Care becomes the time and tasks it takes a care worker to meet an individual’s needs. In this context, being in care often means being subject to the systems and structures developed to complete these tasks in the most efficient, predictable, and profitable way. This is a far cry from the culture of care that characterises our own care and support networks. The experience of care in this commodified sphere can be so different from the experiences of our informal care networks that we can start to doubt whether we are talking about the same thing when discussing care with professionals!

Since the imposition of austerity in 2008, citizens have been repeatedly told that the state cannot afford to fund care services at the levels required to meet demand. The need for care outside of childhood is something that apparently our economy, simply cannot accommodate. For over a decade, the needs of both care workers and care receivers have been increasingly framed as costs and burdens to society. This story of care is not always said explicitly by our elected officials and policy makers but it is often implicit in the policies they adopt. What does care mapping mean in this context? Care mapping can show us that:

• needing care and support is normal; being human means giving and receiving care. Needing care is not a sign that there is something wrong with us, it’s a sign that we are a living human-being.
• our lives are full of caregiving, we are all carers; all of the relationships that matter most to us involve some form of care and support.
• care is not a transaction or a zero-sum game. Many of the caring connections in our care maps are 2 way, they are reciprocal.
• Care is not a scarce resource that must be bought and sold in the market, but an abundant resource that flows through our social relationships.
• Care is not a cost to our community or a debt it must pay. Care is the very thing that generates and sustains it.

With this knowledge in mind, our care maps compel us to question our current economic system. If caregiving is such a fundamental part of human life, why are we not building an economy or a society around this universal need? Why instead are we creating systems that make it harder to care? Many of the obstacles that our current pilot in Commons-based care is seeking to overcome are systemic; resulting from over a decade of austerity and an economic system that fails to recognise the economic and social value of care labour. Care mapping with friends, family members, care workers, teams, community groups, and church congregations can be a transformative community action and a powerful form of political activism.