Chronically ill patients need emotional and practical support. Emotionally, it is difficult to cope with the illness, come to terms with it, and live every single day while managing it; there are tough days when they need practical help and support to get through the day. Keeping these aspects of support separate is helpful to organizations and the government in acknowledging the different types of support needed by chronically ill patients. In reality, the two types of support often overlap to become mutually reinforcing. A practical task that they are unable to do on their own can become distressing, and they need emotional support and encouragement when they need to take one more tablet, inject themselves with insulin, or when they feel they are fighting a losing battle with the weather and their arthritis puts them in relentless pain.
Many patients suffering from chronic long-term diseases such as diabetes, depression, and stroke go through the process of loss; be it the loss of a job, loss of their means of transport, or their feelings of loss in terms of life and loss of hope. Professionally delivered support and support from friends and family, peer groups, often provide patients the means, opportunities, or stimulus to continue in a positive way in their efforts of self-management. To reflect this more realistic and holistic approach, the theoretical principles underpinning the analysis of support will clearly refer to the social and emotional components, whether provided by professionals, family members, or peer groups. There is evidence that this kind of support can reduce stress in the patient and lessen the way the person perceives the level of pain he or she is experiencing. With these parameters and various flexible patient needs in mind, we will in the first part of this essay discuss the difference in the policy and emotional support given to chronic patients in need. In the second part, we would like to hear how patients with three different chronic diseases perceive different types and levels of support given to them.
Understanding Chronic Illness and Its Impact
Chronic illness is generally defined as a condition requiring ongoing management lasting for at least three months or longer, resulting from any number of physiological, genetic, and environmental factors. Because chronic illnesses often exhibit little to no symptoms, their prevalence can be underestimated. Many people do not realize they are living with a chronic illness, especially because it becomes part of their everyday routine. Despite changes that can be made to improve healthcare, chronic diseases are often associated with increasing age over time as well as an overall poorer health status, though there are some that affect certain demographics more than others. For example, chronic conditions such as heart disease mostly affect adults aged 60 to 79; chronic obstructive pulmonary disease primarily impacts females aged 80 and older; and even though anyone can suffer from migraines, they are most common in the 18 to 44 age group.
However, chronic illness can take a toll in more ways than just on a person’s physical state. Many of the enduring effects are on a person’s emotions or mental health, but they can also have social, personal, and workplace consequences. Even receiving a diagnosis of a chronic illness can lead to a sudden or severe mental shock or distress. Many people who live with chronic illnesses or conditions are also at risk for stigma and discrimination, either because of their illness or because some may unfairly profile them as unwilling to take responsibility for their sickness. As a result, support groups and self-help initiatives have been established, and there is a necessity to support people living with or at higher risk of developing chronic diseases. But it is also essential to keep in mind that those with, for example, an invisible or stigmatized chronic illness are less likely to have a caring partner, more numerous days where they are unable to perform daily activities, and less likely to participate in work when compared to adults with no chronic illnesses. Nonetheless, quite a few people with chronic illnesses share similar experiences insofar as the personal and societal ramifications that take place after being diagnosed. Although each diagnosis varies from person to person, there are some common challenges that the vast majority face. One essential issue is a disruption of daily life, and this includes relationships of all types.
Types of Support Networks
There are several different types of support networks that people with chronic illness may harness to support them. Some of these networks are supportive of, or within, formal services and systems, and include a range of health care and social welfare providers. Resources are also available in the community, with some people participating informally in voluntary organizations or services. These networks of care can be immensely valuable to people living with chronic illness. Additionally, other networks are more informal, such as family and friends, and are therefore less tangible in the services and systems designed to meet the needs of patients and families. This distinction between emotional support and practical resources is significant, as it draws attention to the different aspects of patient experience that networks might address. Support and friendship from those going through similar experiences are considered to be a key potential benefit of such groups, and the personal experiences of those connected can complement, and at times challenge, the professional or technocratic knowledge of those on the ‘inside.’ Peer groups, then, offer a different perspective, which can complement other networks. Nowadays, social media and other technological developments mean there are more platforms than ever for providing and seeking out patient and informal support. Many people living with chronic illness have found great value in these avenues for sharing. Telehealth has also opened up new opportunities for people with chronic conditions to access healthcare in meaningful ways. Many people use several of these potential patient networks.
Benefits of Support Networks for Chronic Illness Patients
Support networks for people with chronic illness are informal helper systems, including family, friends, and informal organizations, that provide a variety of types of support to someone who is ill or disabled. However they are conceptualized, there is a small but growing body of empirical work to support the view that social support systems can have a substantive effect on the physiological processes and some health outcomes for the chronically ill and disabled.
The emotional support for the chronically ill and disabled from significant others can help alleviate some of the anxiety already associated with having to wait for physicians for diagnosis of physical problems or surgery to be performed. In addition, chronic illness patients are not forced to do everything themselves, and doing so would cause an even greater drain on their limited resources of time and energy. Both the latter also experience less disruption in their daily activities because of the chronic illness of the person they are providing support for. There is also some evidence to suggest that people with social support are more likely to obey the treatment regimens prescribed by their physicians, and that individuals with support networks have fewer ecological readmissions.
One of the most empowering types of support networks provided to individuals with chronic illness is the opportunity for forming linkages and social ties with other patients. It allows people to feel that they are not alone in their battle to be ‘normal’ once again. Patients learn from each other through experiential knowledge, through others’ models or symptom portrayal, and from increasing their factual information base so that they can make informed choices about their health. People with chronic illness who have a high social support network can create their own resources and engage in self-help activities; thus, they become actively involved in helping themselves by bridging existing gaps in health.
Challenges and Strategies for Building Effective Support Networks
Support networks can serve many significant emotional and practical functions for chronic illness. Despite knowing and understanding these benefits, many people live with an illness without a circle of people they can depend on and who can make them feel cared for and understood. This can be because meeting and connecting with other sick people can be stigmatized and hard, and patients may not know how to actively create that kind of support system. The participants said that patients with chronic illnesses face a range of challenges engaging with and creating support systems. Firstly, they can face stigma from other people who do not want to associate with illness. Secondly, they can face perception-rejection fears and feel vulnerable when they try to interact more by talking about their illness, and can feel bad about burdening others with their problems.
They also said that some experienced frustration in trying to get people to sufficiently respond with emotional support, as well as having to leave people they had become friends with because the friendships were too draining emotionally. Constructive strategies for managing these challenges include receiving and giving support, and promoting an open communication approach, which encourages others to ask for help, and for you to specify what help you need, when and where; being clear about your personal needs and triggers; self-awareness and self-management of personal emotions. To create a more inclusive social environment for connection, some strategies include facilitating other forums that are open to a broader range of people without distinction between them; providing advice and support regarding how to facilitate forums to promote connection; using a strengths-based appreciative inquiry approach when discussing things with health professionals. Technology, in the form of the Internet and social networking, can make connecting with others easier for some people, particularly those less resilient or with restricted mobility. The act of connecting with others in various ways reduces the sense of social isolation and distress associated with chronic illness.
Creating support networks does take an ongoing investment, but at the same time it is hard to keep putting in effort without responses. The last question of the interview probed for any ideas or professional assistance that would help a person create the other kinds of social support they want. Some participants suggested the value of speaking to a professional who could help with suggestions to reduce stigma and sustain a supportive interest in making new connections, and some stated that if they had answers already, they would not be looking for a professional to help them. Those without the will or energy to take further action did not see this kind of professional expertise as insufficient. In order to have effective stress-reducing social connections, one needs many varying kinds of friends. Different friends can provide different kinds of support, advice, understanding, or fun. Sharing concerns requires trust and confidentiality. It is also important to have a variety of people to turn to, so that any one person does not have to take on the burden of supporting you excessively. A relatively small number of people overall is reported as emotionally supportive.