Network Enhancement is the primary compassionate community clinical skill
Network enhancement is, in my opinion, the most basic and fundamental skill for clinicians who have an interest in compassionate communities. In this blog, I will discuss
· What supportive networks look like
· Why they are fundamentally important in health care
· How they can be mapped and mobilised
· Network organisation
What supportive networks look like
Perhaps the easiest way to understand supportive networks and how important they are, is to explore our own. When doing so, it is important to move away from thinking that we are solely talking about people giving help when we are unwell. Supportive networks exist around us all the time. In fact, the effect of them is so profound that they help to keep us alive. A foundation paper for understanding the impact of compassionate communities is Social Relationships and Mortality Risk: A Meta-analytic Review, Julianne Holt-Lunstad, Timothy B. Smith , J. Bradley Layton, July 27, 2010(1). In this paper, the authors looked at the impact of social relationships on longevity and found that they have more effect than any other intervention, including giving up smoking, drinking, diet, exercise and many others. In other words, having good social relationships is the most important factor in our health and well being.
The place to start mapping is the inner network. The people in our inner networks are those who are closest to us. Some of these people are obvious, our spouses, children, close friends and neighbours. We may feel particularly close to our work colleagues. Inner networks generally consist of somewhere between 2 and 10 people, although there are no rules. Some inner networks may extend to 30 people in large families. Having a big inner network is not necessarily better than having a small one. The quality of the relationships is important, rather than the quantity.
Being geographically distant does not necessarily exclude people from being part of an inner network. Improvement in electronic communications, particularly via the internet, means that we can feel close to and have regular contact with family and friends on opposite sides of the world.
I have run network enhancement training on a regular basis for the last few years. This is something that can be learnt by anyone. When asking about what networks do, one of the participants came up with the phrase ‘love, laughter and friendship.’ I think this describes the qualitative aspect of the relationships we have with people. When we get on well, there is plenty of love, laughter and friendship. These are the things that we hold dear and contribute enormously to the quality of our lives. When we think about who is in our inner network, the love, laughter and friendship are key elements in how we relate to each other.
When we start to consider who is in our outer networks, people usually include friends, neighbours and community members who are not in the inner network. In the network enhancement training, I get people to start counting the number involved in the outer network. We then start to count the people who we might not immediately think about being in our networks. We might go to a choir or play a sport. Friendships develop along the way when we are doing something else. Also included are the people we might come across on a regular basis in the community, for example when we go shopping or go to the chemist. Mobile libraries can be a source of social contact in rural areas. The numbers quickly begin to expand. Outer networks might range from anything between 10 and 200, or even more.
Light contact can be life enhancing. Even gentle chats with someone we might come across can connect us to the world. This is quite different from the feelings and thoughts that arise for example when listening to the news or reading the paper.
A common phrase for health professionals, when thinking about someone who is isolated, is to say ‘they do not have anyone around’. However, if we explore the inner and outer networks of our patients and their carers, often there are many more people than we might assume. Looking at the size of inner networks, these might be enormous. Having 50 people around is a very large resource when mobilised. And this is without having considered the community resource of people we do not necessarily know. When looking at a compassionate community programme, stimulation of community resource is an intentional act. Whilst some of this, probably less than 10% is through volunteers, activating community members to look out for the people around them and being friendly is at the heart of it.
Network mapping as a clinical skill mainly focuses on the inner and outer networks. Linkage to community resource is something that is discussed in the blog on service directories.
Why networks are fundamentally important in health care
A primary experience of ill health is increasing fatigue. This is as true for mental as it is for physical illnesses. Increasing fatigue leads to decreasing social contact, which we know is a fundamental determinant of health. Loss of social contact leads to loss of a sense of meaning and value in life. When illnesses become more severe, the increasing social isolation can affect the carer as much as the person with the illness. Their identity becomes subsumed in their role as carer. When all of this is focussed on a small number of people, then carer exhaustion and the ill health that follows becomes more common.
When considering enhancing these naturally occurring networks, a major point is to focus the support on both person with the illness and the carer. Often when people are unwell, they may not want to see many people. Asking them to start mobilising networks can therefore be unsuccessful. The focus on the carer is important. The two domains which can be strengthened are practical tasks of everyday life and that of love, laughter and friendship. Practical tasks include the shopping, cooking, cleaning, walking dogs and gardening as well as spending time with the person who is unwell to give the carer a break. The carer needs to have an identity and life outside of caring so breaks are really important. As a wife of a patient said, when she goes out to do shopping, it seems like minutes to her and hours to the patient. He is cross when she comes back and she feels guilty. She did not have time for her own networks, going for a drink or to the cinema for example. Through a fairly simple task of network enhancement, it is possible to help transform the lives of both patient and carers.
One of the ways I start network enhancement training to ask those people who have been carers what helped their caring experience the most. I have found that when I am running training for a group of health professionals, they usually say that professional care was the most useful thing. I change tack slightly here and ask why people want to be at home when they are unwell. We get to the answer of love, laughter and friendship in the place that they know and love. Once we are here, we can get back on track to see what helped the most. Sometimes emphasising the difference between harm prevention (the main area of medical interventions) and health and well being ( compassionate communities) is helpful.
How networks can be mapped and mobilised
At Frome Medical Practice, we developed an ecomap, or network map, that is based around Circles of Care(2).
Please feel free to use and adapt it. The network map can be left with families so that they can start filling it in over time. Often starting the process is slow but when the map is left with someone, people come to mind who can be added.
Barriers and enablers to network enhancement
Network enhancement is a skill that has to be learnt and developed. There are some very common barriers that will have to be overcome for people to start the process of mobilising their network. These should be discussed from the outset. Finding out what the barriers are is important because unless these are overcome, building a supportive network will not take place. Below are common barriers that I have found come up in conversations about network mapping and enhancement. I have added in some ideas about how these can be addressed. There are many others that will arise and you will need to find your own solutions.
‘ I don’t want to be a burden’. This is so common that it is part of nearly everyone’s thinking. I reply to this in a number of ways, depending on what I think is appropriate. When people in caring networks are asked about whether they feel it was a burden looking after someone, they invariably say it was a privilege(3). I will sometimes ask why would you want to deny the people who know and love you the opportunity to look after you when you are not well? This is particularly relevant in the context of end of life care. People want to feel good about how they helped for the last phase of someone’s life. They will carry the memory of this with them for the rest of their lives. It is a chance for example for children to demonstrate their love and affection for all their parents have done for them.
· ‘Everyone is too busy’. I think some of this can be answered by considering how the supportive network functions. If we are looking at a resource of 30 to 50 people, then getting individuals to do a small amount quickly adds up in a significant way. For example, giving a someone ring to say is there anything you want from the shops is the type of task that can be completed without extra work. Someone walking to dog can be something people enjoy. It can also help to use the example above about why would you want to deny the people who know and love you the opportunity for to look after you.
· ‘People aren’t specific about the help they can give’. Another recurring theme is that family, friends and neighbours can say ‘is there anything I can do to help?’ The answer to this is commonly ‘no, we are managing fine at the moment.’ The problem with this is this is how networks are collapsed rather than enhanced. After 3 times of asking, people no longer know what to day and rather avoid meeting altogether. A quick answer to saying no is to say that caring is a marathon not a sprint. This means that it is important to build networks early for the long run. If a carer becomes exhausted and can no longer care, then it is common for a patient to be admitted to an institution. One of the key phrases for network enhancement is ‘just say yes.’ Whenever anyone asks if they can help, just say yes. If someone asks, then being specific is a good idea about how they can help is a good way of involving them. At the same time, learning the skill of asking is a way of building a network.
· ‘ I want to do the caring myself.’ As we discussed at the beginning, there is a common misperception that caring is all about the personal care delivered to a patient. But shopping, cooking, cleaning, love, laughter and friendship do not require contact with the patient. These are all important features of a supportive network. This particular way of looking at things also answers some of the problems people have about privacy. Going out for a drink with someone is not an invasion of privacy. Having someone drop a bit of shopping round can be very unobtrusive.
There are of course, a variety of other reasons why people are reluctant to build networks. The experience of helping people build their networks will be invaluable to finding ways of answering concerns as they appear. Being skilful in listening to people’s worries is the most important part of this.
Often the best person to organise the network is not the main carer. There may be a son or daughter who is ideally placed to do this. There are a number of apps that can help enormously. Examples are Joinlty app https://jointlyapp.com and Gather My Crew https://www.gathermycrew.org . There is something else as well called Meal Train https://www.mealtrain.com. It is possible, for example to put a request out to see if someone can help with a hospital appointment or drop a meal by through putting a request out on the app. This saves the problem of asking someone to do something and them saying no. Normally if a request goes out, somebody will step up. All of this information can be seen by everyone who is invited on to the app as a message. People can then get the idea of how they can help and see other people stepping up to the mark.
When an app is used, it is possible for a son or daughter living in a different country to organise a network. This helps them as well, as they feel they are doing something to help. The messages are also a good way of keeping people updated, both in terms of things that are going well and when there are problems. This is particularly helpful because it no longer is necessary to ring everyone to let them know what is happening.
Not everyone will feel comfortable with using an app. This is not necessarily a problem. If there are people like this who want to know what is happening or want to help, it is much easier to talk to them directly and have someone else enter the information on an app.
Network enhancement is a primary skill in the context of compassionate communities. Running a network enhancement training is a great way of shifting the perspective of professionals to one in which they come to understand that the most important part of our lives are the relationships we have, not the professional support we give. The professional support is needed and important but is not central. Once the professional perspective is shifted, then it is easier to see how their role becomes one of supporting the naturally occurring networks. Doing network mapping early in the journey of ill health means that networks can grow and become resilient. Where there are gaps, it is then possible to see how the networks can be further enhanced by building in community resource.
Network mapping and enhancement is a primary clinical skill. It is something which should be done as a matter of routine. Training the broader multidisciplinary team means that all team members can build this into the clinical practice.
1. Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS medicine. 2010;7(7):e1000316.
2. Abel J, Walter T, Carey LB, Rosenberg J, Noonan K, Horsfall D, et al. Circles of care: should community development redefine the practice of palliative care? BMJ supportive & palliative care. 2013:bmjspcare-2012-000359.
3. Horsfall D, Yardley A, Leonard R, Noonan K, Rosenberg JP. End of life at home: Co-creating an ecology of care. 2015.