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Social Isolation: A Practical Guide for Nurses Assisting Clients with Chronic Illness (CE)
Social isolation is a serious problem in our society, and the chronically ill are especially vulnerable. The lack of needed and wanted social contacts is a serious source of discomfort that can lead to further health problems. Many factors are involved, including limited mobility, lack of transportation, apparent and hidden disabilities that are socially undesirable, lack of employment, drained relationships with caregivers, changes of social roles, and emotional and psychological stress and dysfunction. Nurses are in a unique position to intervene on behalf of those social isolates. Practical interventions include contacting peer counselors, referring the patient to a support group, helping to rebuild the family network, enhancing the patient’s spirituality, helping the patient use Internet-based supports, and practicing the therapeutic use of self. Social isolation is a threatening condition for many people, but it has many solutions. In order to provide holistic care, nurses can address this problem on an individual and societal level.
Social isolation is an unfortunate, pervasive reality for many chronically ill people. In our fast-paced, youth- and beauty-obsessed society, those dealing with illness can be left behind. Much has been written about social isolation in the nursing literature, but a practical guide for nurses is lacking. Those who are already coping with the complexities of managing chronic illness are especially vulnerable to the effects of social isolation. Many rehabilitation clients are living without the needed social contacts many of us take for granted. Nurses are in a unique position to assess, recognize, and begin intervention on behalf of patients who are at risk for social isolation. This article summarizes social isolation in the chronically ill and offers some practical guidance for the rehabilitation nurse in preventing and relieving isolation in this population.
In order to intervene appropriately, social isolation must be understood. A person’s choice to seek solitude at times is healthy. Solitude is voluntarily chosen time alone for reflecting, centering, feeling spiritually connected, and finding inner peace and strength. A problem exists when social isolation is perceived as negative and involuntary. Biordi (2002) asserted that “involuntary social isolation occurs when an individual’s demand for social contacts or communications exceeds the human or situation capability of others” (p. 119). Killeen’s (1998) definition is more expansive: “Social isolation with choice is aloneness, while social isolation without choice is loneliness” (p. 764). Killeen describes loneliness as “a condition that describes the distressing, depressing, dehumanizing, detached feelings that a person endures when there is a gaping emptiness in their life due to an unfulfilled social or emotional life” (p. 764).
Like pain, social isolation is what the patient says it is. The client’s perception of his or her situation is key in addressing this problem. Simply noting the number and frequency of social contacts a person has is not adequate in determining whether he or she is socially isolated. For example, a homebound elderly woman whose child visits every day may still feel isolated and lonely because she no longer visits her peers at the local church. Satisfactory social lives are determined by the quality and reciprocity, not quantity and frequency, of contacts. The hierarchy of social needs exists on four levels, as described by Biordi. The levels begin with self, then involve close confidants. The third level involves organizations such as schools and churches. Finally, the community level involves connection to the larger social structure and world. Connections on all four levels satisfy a person’s social needs.
Social isolation and its effects have been studied and written about in different populations of interest to rehabilitation nurses in the nursing literature. It is well documented that many chronically ill people suffer from social isolation. Moore (2002) and Riegel and Carlson (2004) described and addressed isolation in the lives of patients with heart failure and their caregivers. Mukherjee, Reis, and Heller (2003) related social isolation in the lives of women with traumatic brain injury. Rural caregivers and stroke survivors’ needs for emotional and social support were addressed in a study by Pierce, Steiner, Govoni, Hicks, Thompson, and Friedemann (2004). More studies can be found on isolation in those with fibromyalgia (Cudney, Butler, Weinert, & Sullivan, 2002) and cancer, diabetes, rheumatoid disease, and multiple sclerosis (Hill & Weinert, 2004).
Research has also shown that older adults, widows, and widowers (Letvak, 1997; Lynd, 2002; Randers, Olson, & Mattiasson, 2002; Stewart, Craig, MacPherson, & Alexander, 2001), people with HIV and AIDS (Guillory, 1995; Moneyham, 2003), and the mentally ill (Perese & Wolf, 2005) suffer social isolation to a disproportionate degree. Patients and families who live in rural areas are also at higher risk for social isolation (Biordi, 2002; Cudney et al., 2002; Fitzgerald, Pearson, & McCutcheon, 2001; Sullivan, Weinert, & Cudney, 2003; Weinert, Cudney, & Winters, 2005).
Social contact with others is essential for a full and meaningful life. People are social and interdependent by nature. Social contact is a main component of human comfort. As nurses we are interested in assessing and ensuring the comfort of our patients. A nursing theory that defines and describes this concept in depth is Kolcaba’s (2003) comfort theory. Kolcaba’s theory includes a sociocultural context in her taxonomic structure of comfort. Her theory describes in depth interpersonal, family, and societal relationships as one of four contexts of human comfort. Incorporating comfort and its sociocultural context is important in providing holistic health care. One can infer from Kolcaba’s theory that the lack of social comfort is inherent in social isolation and can have a serious impact on a person’s level of comfort, well-being, and health.
Living without social contacts and comfort can have serious consequences for a person’s health and life. Biordi (2002) asserted that chronically ill people with the fewest social and community ties are three times more likely to die than those with more ties. Redman’s (2004) book on self-management of chronic disease makes repeated references to needed support from others in successful disease management. Juggling the many tasks needed to maintain health in a chronic disease state can be daunting even with ready help, but to be alone in that situation can be unbearable. The highest rate of suicide in the United States is in older men, whose major risk factors include poor health, living alone, social isolation, and loneliness (American Association of Suicidology, 2004; Lynd, 2002). Social isolates experience myriad negative feelings, including loneliness. Feeling isolated and lonely may cause depression and anxiety.
Isolation in Chronic Illness
The common research findings related to social isolation in the chronically ill can be summarized. The first theme evident in the research is functional limitations in activities of daily living that hinder independence (Biordi, 2002; Cudney et al., 2002; Fitzgerald et al., 2001; Sullivan et al., 2003; Tanner, 2004). Decreased mobility, less energy, fatigue, and pain led to diminished social contacts through fewer outings outside of the home. Being secluded and homebound is a common reality for the chronically ill.
A second theme is emotional and psychological isolation related to illness. Biordi (2002) detailed how personality changes related to neurological disorders can alter one’s ability to interact socially. Mukherjee and colleagues (2003) described the struggle women living with traumatic brain injury experience. Their personal emotional struggles and strained interpersonal relationships were furthered by marginalization in their communities. These women’s cognitive disabilities often were misunderstood and invisible to others, leaving them feeling alone.
Loss of social roles is also an important aspect of chronic illness. Lack of employment decreased one’s social circle (Biordi, 2002; Moore, 2002; Mukherjee et al., 2003). Inability to work can also cause financial strain and leave very little money available for anything but the basic necessities for survival and health care. Therefore, social activities may become luxuries for those with scarce resources.
Difficulty finding transportation is also a major problem leading to isolation. The often complex needs of the disabled leave them dependent on specific types of transportation that are not readily available. Many studies include people expressing frustration with a lack of transportation and the negative impact it has on management of their chronic illness (Biordi, 2002; Cudney et al., 2002; Fitzgerald et al., 2001; Letvak, 1997; Mukherjee et al., 2003; Sullivan et al., 2003). Those living in rural areas struggle more often with finding transportation than urban dwellers.
A final important theme is the social isolation experienced by caregivers. Aldred, Gott, and Gariballa (2004) and Moore (2002) found that caregivers of patients with heart failure felt emotionally isolated and lonely and needed to stay at home much of the time. Families of brain injury survivors can have difficulty re-entering society because the patient’s inappropriate social behaviors lead them to avoid social situations. The stress of coping with a family member’s chronic illness may lead to drained relationships, and all family members may need more support.
Healthcare providers need to be aware that social isolation can be experienced by those in institutions also. Ready-made social environments such as senior housing do not necessarily alleviate social isolation (Biordi, 2002). Residence in assisted living or skilled nursing facilities also does not guarantee adequate social comfort. The other residents may have so few resources of their own that they cannot share with others in need. Patients in acute rehabilitation facilities may also feel lonely despite being surrounded by other patients and providers. The types and quality of contacts needed by each person, whether at home or in a hospital, must be addressed.
As stated earlier, the nurse must appreciate that social isolation is whatever the patient says it is. However, an assessment of the person’s social situation can start with an objective assessment. What are the number and frequency of social contacts? On which of the four levels of social relationships does the person appear to have contact? Determining whether the patient lives alone, lives in a rural environment, and is able to drive a car is important. Also, checking employment status and type of living arrangement (e.g., single-family home or assisted living apartment) is useful. Finding out whether the person has a significant other and children and how close they live to one another is also helpful. If the patient belongs to a peer group organization or already attends a support group of some kind that will provide background.
The second part of the assessment is finding out the patient’s perception of her or his social situation. Is the patient expressing negativity? Is the person saying that her or his social needs on one or more levels are not being met? Actively listen to the patient’s responses without filtering them through your own preconceived ideas or judgments. Synthesizing all of the information gathered and then verifying its validity with the client will provide a solid base on which to build a plan to either strengthen an existing social support network or perhaps begin building a desperately needed one.
Social isolation is clearly a problem in our society. Nursing interventions to help combat the problem are being studied and used. Biordi (2002) asserted that social isolation is one of the most important aspects of chronic illness to be managed in the plan of care because of its large impact on the client and his or her support network. Many interventions, from high-touch and no-technology to low-touch and high-technology use, have been discussed in the literature. The following are a few examples with concrete ideas on implementation that can be used in any setting where chronically ill people receive services.
One intervention that can be effective is peer counseling. This counseling can be informal or more formal and initiated and supported by the professional healthcare worker. Perese and Wolf (2005) discussed a telephone hotline set up at a clinic that helped peers befriend each other by providing emotional support and active listening over the phone. Patients with heart failure also used peer support in the Riegel and Carlson (2004) study. The nurse can ask people who are managing well with their chronic illness whether they are willing to volunteer as peer counselors. The nurse can then offer to arrange a meeting between the counselor and a patient who is experiencing isolation and who is not managing well. The peer counselor volunteer may also be willing to visit clients in institutions who need and desire more social contact. Peers can also provide a wealth of information on ways to connect with resources such as assistance with transportation, volunteers, friendly visitors, private pay aides, or financial aid.
Referral to a support group is an important and often effective intervention. A multitude of support and self-help groups exist for people coping with everything from diabetes mellitus to the death of a spouse or a child. The literature includes many studies that show how support groups are very effective in meeting patients’ social needs (Biordi, 2002; Purk, 2004; Stewart et al., 2001). Participants can exchange information, including how to access help with transportation and other resources. When referring a patient to a support group, the nurse can gather information on what groups are available by contacting local hospitals, nursing homes, community health centers, and the public health department. Some 12-step support groups have phone numbers for contact people in the phone book. Accessing Internet sites related to the chronic illness is also helpful because some associations have both national and local support groups. Lists of support groups according to illness, with their locations, phone numbers, and contact information, can be made and kept ready for clients seeking help. Starting a support group or newsletter can fill a gap in social support in your area.
Rebuilding Family Networks
The nurse can be in a position to advocate for the chronically ill person in requesting more social support from family members and significant others. Bearing in mind that family ties are powerful and sometimes tense, the nurse can make contacts while treading lightly until a trusting relationship is established. Sometimes making a contact with an older person’s adult child to discuss the parent’s social situation and its impact on his or her health is very helpful because the lay person does not always intuitively know what a chronically ill person needs. The client may be embarrassed about feeling isolated and lonely and may be afraid to burden his or her family. Initiating and supporting contact between the parties can greatly enhance family communication and understanding about what the patient’s needs are. The nurse may refer to the Biordi (2002) text or literature on family dynamics and family therapy before intervening in more complex cases. Working with and referring to social workers and other disciplines is appropriate. Exploring ways to redefine self in relation to others is a strategy discussed by Randers and colleagues (2002). Discussing role changes and how new roles can provide new opportunities in life can give clients hope. For example, a new widow may redefine herself as the new head of the family. Keep in mind that the definition of family is broad. “Family” support may come from a local church group that has volunteers such as friendly visitors. Other sources of support include youth groups, senior and adult daycare centers, county offices of the aging, and visiting nurse agencies and acute care centers with lists of volunteers.
Nurses are sometimes reluctant to talk about spirituality with their clients, although it is known to be a major source of strength for many people. Spirituality is not synonymous with religiosity, and any nurse can broach the subject regardless of her or his religious beliefs or those of the patient. The nurse can promote the client’s feelings of control, self-esteem, meaning, and purpose in life. With compassionate listening and sharing, the nurse can help a patient find meaning in her or his suffering and ways to relieve the pain, if possible. Simply being present and sharing someone’s burden can be enough. Helping a patient overcome feelings of guilt, regret, sadness, and depression can greatly enhance her or his quality of life. Some concrete self-care spiritual interventions that can be prescribed are meditation, reading, yoga, tai chi, and even pet therapy. Walton, Craig, Derwinski-Robinson, and Weinert’s (2004) study included many useful suggestions for enhancing spirituality in the chronically ill. Some of these comforting techniques include watching videos of nature, journaling, listening to music, and repeating an optimistic mantra or quotation.
Universal access to the Internet is fast becoming a reality in our society, and it can be used as a powerful tool to decrease social isolation. The decreasing cost of basic computer equipment and developments such as Web television, which uses a simple phone and television combination, make Web access more feasible for everyone. Several recent studies have tested Internet-based support as an intervention in managing chronic illness (Biordi, 2002; Dickerson, 2002; Pierce et al., 2004; Weinert et al., 2005). This support is especially helpful for those living in rural areas and those who are housebound. Some sites include links to local chapters and resources such as transportation and volunteers. Even if developing a formal Internet-based program is not feasible in your area of practice, encouraging patients to use e-mail and chat rooms can still provide needed contacts. Some healthcare providers offer to communicate as needed with their patients via the Internet. Connecting patients to each other in cyberspace can be beneficial, too. A list of Internet sites for patients coping with certain chronic illnesses can be distributed easily and makes the process of finding support easier and friendlier for them. See Figure 1 for a list of Internet sites for patients with brain injuries and their families. Such a list can be created for different diagnoses and include local sites as available. Always caution clients to keep a healthy skepticism when reading any information gleaned from the Internet and to always confer with their physician about any specific recommendations found before changing their self-care practices.
Therapeutic Use of Self
Many patients claim that their healthcare providers are a major source of social support in their lives. Nurses are seen as trustworthy, compassionate, and knowledgeable confidants in many cases. Presencing and active listening are invaluable tools in providing emotional support. An individual nurse may not be able to greatly increase the number of social contacts a person has, but he or she can provide caring, genuine, high-quality contacts. Whether you are a nurse in an acute rehabilitation setting or making home visits, your presence often is a very important part of that patient’s social comfort. Biordi (2002) described the authentic intimacy a patient and nurse can share and how powerful that relationship can be. Never underestimate the ability you have as a nurse to bring patients comfort and hope just by being there and spending a few minutes listening instead of doing. Validating a patient’s importance as a human being can be as simple as stopping, making eye contact, and gently squeezing his or her hand.
The case of Ms. S and the care she received from her rehabilitation nurse is an informative example. Ms. S is a 60-year-old woman who recently suffered a moderately severe traumatic brain injury (TBI). She slowly progressed at the inpatient rehabilitation facility, where she developed a close, therapeutic relationship with her nurses. Before her injury, Ms. S was a successful, independent business owner who lived alone and had infrequent contact with her only son. She was a long-term recovering alcoholic who was active in Alcoholics Anonymous (AA). As the nurses grew to know Ms. S at the rehab, they noticed she had few visitors. They decided an assessment for potential social isolation after discharge was appropriate. Ms. S was asked about her social life and social support, her feelings, the frequency of contacts in the past, her expectations on discharge, and her anticipated needs and resources. She revealed that she was concerned about not having enough emotional support. She was very concerned about being able to attend her AA meetings again because these were her most important sources of support before her injury. Part of Ms. S’s discharge preparation included the nurses helping Ms. S make a list of social contacts and contacting several people before she left the facility. They orchestrated two family meetings between the patient and her son, which helped them to reconnect. Ms. S was computer literate and familiarized herself with the list of Web sites for TBI survivors that the nurses provided. Ms. S left rehab with a solid plan in place, including planned weekly visits from her son, an Internet chat room support group on a TBI site, and a commitment from a volunteer to bring her to an AA meeting once a week. The nurses’ awareness, assessment, and interventions, and the willingness and cooperation of Ms. S, warded off social isolation for this potentially vulnerable person challenged with managing a new chronic condition.
Many chronically ill people suffer from loneliness due to social isolation. The negative feelings associated with isolation can have serious consequences and even hasten death. Nurses are in a unique position to intervene when a patient is involuntarily isolated. After a nurse has identified a patient at risk of being socially isolated, a thorough assessment is completed. Depending on the findings, the nurse has several interventions to choose from. One or a combination of the following interventions may be most appropriate: connecting the patient with a peer counselor, referral to a support group, supporting family communication, enhancing spirituality, therapeutic use of self, and assisting patients with use of Internet-based supports. Taking a multidisciplinary approach and working with social workers, therapists, and other providers the person has contacted can widen the base of support even further.
Nurses and clients can use their combined resilience and resources to tackle this problem of social isolation and spread hope to all people in need of friendship, strength, and love no matter what they are facing and coping with on a daily basis. Society needs to recognize that those who need it the most often receive the least amount of attention, and nurses can begin to change attitudes one person, family, organization, and community at a time. Social isolation is a serious problem for many people, but it is a problem that has many solutions. In order to provide holistic care, nurses need to recognize social isolation and work to address this problem on an individual and societal level.
About the Author
Ursula A. Holley, RN, is a graduate student in nursing at Sage Graduate School in Troy, New York. Address correspondence to her at 345 County Highway 112, Gloversville, NY 12078 or firstname.lastname@example.org.
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