The emotional toll of end-stage renal disease: differentiating between social isolation, loneliness, and disengagement.
A concept analysis helps clarify ambiguous concepts by producing an operational definition, defining attributes, antecedents, and consequences (Walker & Avant, 2011). This paper presents a comparative concept analysis on social isolation, loneliness, and disengagement to define each, and differentiates them from one another. A modified version of the Walker and Avant (2011) method is utilized for this analysis. Differentiation of the concepts is particularly important in planning research with chronic kidney disease, so that targeted measurements and interventions can be aimed at the exact problem with the most potential to actually help the situation. Using the terms interchangeably is a disservice if their meanings are singularly different, and it confounds possible interventions and solutions. The purpose of this paper is two-fold: to differentiate the terms and to identify the most appropriate term for studying the various challenges for patients facing long-term, debilitating disease management.
Social isolation has been the subject of research for a number of years, yet there remains a degree of inconsistency in how it is defined and measured. In spite of the technological advances of the recent decades, human social relationships remain a significant issue affecting the physical and psychosocial health of many populations. Studies have associated social isolation with severe mental illness (Linz & Sturm, 2013), mortality (Pantell et al., 2013), increases in systolic and diastolic blood pressure (Shankar, McMunn, Banks, & Steptoe, 2011), and perceived stress (Webel et al., 2014). It has been used synonymously with social support and small social networks (Nicholson, 2009), and classified as both objective (Linz & Sturm, 2013; Shimada et al., 2014) and subjective (Hawthorne, 2008; Nicholson, 2009; Warren, 1993). A lack of a consistent definition of the concept makes measurement difficult and fosters use of various measures, which can result in conflicting data (Pettigrew, Donovan, Boldy, & Newton, 2014).
The Merriam-Webster Dictionary does not define social isolation as a construct, but defines each term individually. Social is defined as "tending to form cooperative and interdependent relationships with others" ("Social", n.d.,). Social appears to be the opposite of isolation with its focus on relationships with others. Isolation is defined as "the state of being in a place or situation that is separate from others" ("Isolation", n.d.). Merriam-Webster also provides medical definitions of "a segregation of a group of organisms from related forms in such a manner as to prevent crossing" and "a psychological defense mechanism consisting of the separating of ideas or memories from the emotions connected with them" ("Isolation", n.d.). All of these definitions have a predominant theme of separateness.
Social isolation has been studied in the severely mentally ill and is defined as "a state of being unintentionally alone, with a lack of fulfilling social connection, resulting in the subjective experience of loneliness and distress" (Linz & Sturm, 2013, p. 245). Linz and Sturm (2013) identify three constructs of social isolation that relate to severe mental illness: stigma, alienation, and loneliness. These notions of stigma, alienation, and loneliness are echoed in Pollack's (2009) work on criminalized women. In a concept analysis of social isolation in older adults, Nicholson (2009) proposed that it is "a state in which the individual lacks a sense of belonging socially, lacks engagement with others, and has a minimal number of social contacts and they are deficient in fulfilling and quality relationships" (p. 1346). Dury (2014) utilizes the same three ideas when studying the elderly. Another study defines social isolation as having limited contact with people and loneliness or perceived social isolation as the psychological counterpart (Shankar et al., 2011), whereas Pettigrew et al. (2014) outline two separate components of social isolation: objective and subjective. Finally, Zavaleta, Samuel, and Mills (2014) define social isolation as the lack of quality and quantity of social relationships with other people at the different levels of human interaction, such as individual, group, community, and the larger social environment. These definitions focus on the idea of separateness from the group.
Defining attributes are the characteristics that are most frequently associated with the concept of social isolation. When listed, the defining attributes should immediately bring the concept to mind (Walker & Avant, 2011). The defining attributes of social isolation are:
* lack of quality relationships with persons in social network
* lack of engagement with others
* absence of a sense of belonging
* lack of fulfilling relationships.
The number of members of the social network is less important than the quality of the relationships with the members of the social network. One can have a large social network and, yet, still experience social isolation if the members of the network are unreliable, uncaring, or provide only superficial relationships (Nicholson, 2009). Lack of engagement can be failure to call friends or family, or being unable or unwilling to contact because of other barriers such as the inability to use the telephone or fear that friends are uninterested in hearing the details of what is being experienced. One can be in a room full of people yet not engage in socialization and, therefore, be socially isolated. The need for love and a sense of belonging is a basic human need, which prevents a person from feeling or being socially isolated. Absence or lack of fulfilling relationships is an attribute of social isolation because one can socially engage with others without feeling fulfilled and still feel socially isolated. Although launching new friendships may be more challenging later in life, there is a need to join with others who think in a similar way and can be trusted (Pettigrew et al., 2014) and to strengthen relationships based on shared experience (Stein & Tuval-Mashiach, 2014).
Antecedents and Consequences
Antecedents are those events or circumstances that must be in place prior to the manifestation of the concept (Walker & Avant, 2011). Antecedents related to social isolation include a prohibitive environment and physical and psychological barriers (Nicholson, 2009). Restrictions imposed by dialysis schedules (Tanyi & Werner, 2008; Yodchai, Dunning, Hutchinson, Oumtanee, & Savage, 2011), physical effects of headache, nausea, fatigue, and weakness, as well as anger and depression, impact social activity (Bajkale & Ba[section]er, 2011), thus increasing the risk for social isolation in those living with ESRD. Consequences are those events that occur because of the concept. Consequences of social isolation include development of negative coping strategies (Warren, 1993), and cardiovascular disease, diabetes, smoking, and depression (Cacioppo & Cacioppo, 2014) and loneliness (ElSadr, Noureddine, & Kelley, 2009). Social isolation definitely depends on an unfulfilled need of some kind involving other persons, but it is unclear if it is the same as loneliness or if loneliness is an inevitable outcome.
The concept of loneliness is similar to social isolation, but there are distinct and important differences. Studies show a correlation between loneliness and fatigue with self-care with hemodialysis patients (Akin, Mendi, Ozturk, Cinper, & Durna, 2013), as well as sexual frequency, communication, satisfaction, avoidance and sensuality (Koc & Saglam, 2013). Loneliness has also been associated with the reporting of a mental health diagnosis (Coyle & Dugan, 2012), as well as depression, social isolation, and greater likelihood of specific negative health behaviours (Shankar et al., 2011). Loneliness may be more of a personal feeling than social isolation, which is reflected by a more external focus.
Loneliness is defined by Merriam-Webster as "being without company," "cut off from others," "sad from being alone," and "producing a feeling of bleakness or desolation" ("Loneliness", n.d.). Peplau and Perlman (1982) suggest that loneliness is a subjective experience resulting from a deficiency in social relationships. It is a product of individual valuation of the number of interpersonal relationships, the quality of those relationships, and individual standard for those relationships (Coyle & Dugan, 2012; de Jong Gierveld, Keating, & Fast, 2014). Hence, loneliness is not a factor of having no or few friends or visitors; it is more akin to a feeling of dissatisfaction with the quality, number, and/ or frequency of interactions, which leaves one with negative feelings such as sadness, anger, hostility, futility, abandonment, or guilt.
The defining attributes of loneliness are:
* sense of alienation
* interpersonal isolation
* distressed reactions.
A sense of alienation involves a feeling of separation or estrangement, and may be from one's self (Bekhet, Zauszniewski, & Nakhla, 2008) or from others (Kvaal, Halding, & Kvigne, 2013; Stein & Tuval-Mashiach, 2014). In a study on Israeli veterans of combat and captivity, the sense of alienation was described as living in "a different world" and "not connected to anything" (Stein & Tuval-Mashiach, 2014, p. 4). Bekhet et al. (2008) describe the self-alienation as having two components: emptiness and depersonalization. Interpersonal isolation refers to the feeling of being alone, which can be social, geographic, or emotional in nature (Bekhet et al., 2008; Kvaal et al., 2013). It is important to note that interpersonal isolation refers to a feeling, and that even one with many social connections may still experience loneliness (Coyle & Dugan, 2012). Distressed reactions may be physiological, behavioural (Bekhet et al., 2008), or psychological (Coyle & Dugan, 2012). These reactions may also include headaches and upset stomach (Bekhet et al., 2008), depression (Shankar et al., 2011), and decrease in self-care (Akin et al., 2013).
Antecedents and Consequences
The primary antecedents of loneliness are a personal dissatisfaction with the quality of one's interpersonal relationships (ElSadr et al., 2009) and the inability to reach out or see the need to reach out to others for help (Coyle & Dugan, 2012). Consequences of loneliness include: negative emotions (Kvaal et al., 2013), decrease in self-care (Akin et al., 2013), passivity in social interactions (Qualter et al., 2015), lower self-reported health measures and increased reporting of mental health diagnosis (Coyle & Dugan, 2012), and depression (Shankar et al., 2011). The negative and more passive reaction to feelings of loneliness may set the stage for a person to actually disengage from the social structure.
A broad understanding of disengagement is essential for nurses caring for clients with ESRD because they are in a unique position to assess disengagement capacities of patients. Patients with poor disengagement capacities may be more likely to experience depressive symptoms than those with better disengagement capacities (Dunne, Wrosch, & Miller, 2011). Other than the primary caregiver, nurses often have the most contact with patients with chronic illness. In order to provide holistic care and ensure patients maintain optimal well-being, nurses must evaluate patients at each encounter for disengagement and make appropriate referrals where disengagement is maladaptive or debilitating.
Disengagement theory is a social-psychological theory of aging that suggests that disengagement is the inevitable process of dissolving relational ties between a person and society; some consider it a normal part of the aging process (Johnson & Mutchler, 2014; Reed, 1970). It has been contrasted with continuity theory, which suggests that healthy aging requires continuing previous roles or similar roles to maintain a positive contribution to society. A third theory on aging, which is in contrast to disengagement theory, is activity theory. Activity theory suggests that successful aging occurs when the elderly participate in new activities to help avoid motivation toward disengagement (Robinson & Stell, 2015).
The Merriam-Webster Dictionary defines disengage as "to separate from someone or something, to stop being involved with a person or group, to stop taking part in something" ("Disengage", n.d.). In their concept analysis on connection in older adults, Stovall and Baker (2010) cite bond and association as defining attributes of connection. Connection might be considered contrary to disengagement. In the literature, disengagement is largely discussed as the response to a threat to one's self-esteem or social identity, and refers to disengaging from a particular domain (Cheng & McCarthy, 2013; Leitner, Hehman, Deegan, & Jones, 2014) or a particular group in which one experiences negative stereotypes (Pagliaro, Alparone, Pacilli, & Mucchi-Faina, 2012). Psychological disengagement involves using discounting and devaluing as an approach for dealing with differential treatment and other factors based on groups (Laplante, Tougas, Lagace, & Bellehumeur, 2010). One study defined disengagement as a dissociation of self-esteem from feedback received (Tougas, Rinfret, Beaton, & de la Sablonniere, 2005). Leitner et al. (2010) use the term adaptive disengagement to describe disengagement across a variety of situations and domains in response to environmental cues, which are not limited to stigmatized feedback.
Defining attributes of disengagement are:
* dissociation from a particular group or domain
* absence of association or bond with others.
Dissociation from a particular group or domain may include work, volunteerism, civic organizations, social networks, and goals, which become perceived as unattainable (Laplante et al., 2010; Wrosch, Rueggeberg, & Hoppmann, 2013). This dissociation may be an attempt to buffer the emotional consequences of discrimination, negative feedback, or personal failure. However, in other circumstances, it may be an endeavour to find respite and replenish personal resources (Coyle & Dugan, 2012). Absence of association or bond with others may be evidenced by not thinking about a particular domain or by physically withdrawing from a particular domain or group (Wrosch et al., 2013). Adaptive disengagement may be seen as a self-protective process (Leitner et al., 2014) when remaining part of the group or process is seen as too overwhelming or threatening to continue.
Antecedents and Consequences
The precursors of disengagement include a perceived threat to one's self-esteem or social identity, discounting feedback, and devaluing the domain. Perceived threats to one's self-esteem or social identity vary between individuals and over the life span. The elderly are at risk for threats related to ageism in addition to disabilities associated with many chronic illnesses. Discounting feedback refers to attributing less credibility to negative feedback received, whereas devaluing refers to withdrawal from a particular domain or group, generally after discounting has occurred (Laplante et al., 2010). Consequences or the possible outcomes of disengagement depend on whether disengagement is adaptive or maladaptive. Consequences of adaptive disengagement include maintaining social identity, increased stress management, increased multiple role management, recovering personal resources (Cheng & McCarthy, 2013), and reduced negative mood and increased overall well-being (Dunne et al., 2011). Consequences of maladaptive disengagement are role conflict, poor stress management, feelings of failure, loneliness, and depression. Whether the disengagement is adaptive or maladaptive depends on the perception of the person involved. For all three concepts (social isolation, loneliness, and disengagement), nursing actions are focused on mitigating the negative aspects or outcomes associated with the concept.
Although all three concepts have a negative connotation associated with each in some way, there do appear to be distinct levels of intensity and varied need for action. Social isolation is having inadequate quality and quantity of social relations with other people. It is manifested as an involuntary loss of one's ability to affiliate with a group. An elderly man whose last close friend has just died might find himself socially isolated because of his thrice-weekly hemodialysis schedule. Disengagement is similar to social isolation, but it manifests as the voluntary withdrawal from groups. It might be considered as a mental or physical process that occurs in response to a threat to one's self-esteem or social identity. Although it might be voluntary, withdrawal could still be seen as desirable or undesirable by the individual. An aging woman might drop out of her book club due to post-dialysis fatigue. Both social isolation and disengagement are distinct from loneliness, which is a measure of one's reaction to the quality of relationships or the absence of the relationships. Loneliness is a negative emotion that sometimes results from social isolation or disengagement, but it can also be present when neither of these other situations exists. One can be lonely in the midst of other people if no personal joy or satisfaction is perceived to be possible. Although all three concepts have a degree of negativity associated with them, it seems clear that how the person reacts to the situation is the key to long-term consequences and appropriate nursing interventions. There also appears to be an implied sequence to the concepts, although it is not finite or inevitable. The level at which one is able to adapt to the situation appears to influence whether it has a negative (maladaptive) or neutral (adaptive) effect. Because of the negative aspect of the overarching idea of being alone, no positive aspects were identified. At best, adaptation to the situation could be seen as possibly "not negative," but it is doubtful if any of the concepts could be portrayed as positive. Even the elderly lady who disengaged from her book club might find relief from the gossip (a neutral response), but not necessarily happiness at her loss of social interaction. Table 1 provides a comparison of the three concepts.
CONCLUSIONS AND RECOMMENDATIONS
The debilitating effects experienced by individuals with ESRD negatively impact their physical and socio-emotional well-being Early recognition of restrictive environments, personal dissatisfaction with interpersonal relationships, and perceived threats to self-esteem or social identity allow for intervention and prevention of long-term mental and physical consequences. All patients with ESRD should be evaluated for social isolation, loneliness, and disengagement. Comprehensive assessment of social network on admission to acute care facilities can provide discharge planners with vital information and time to make appropriate referrals to community groups. Online support groups exist for a number of chronic diseases and may be a viable alternative when physical barriers prevent face-to-face social interaction. Education regarding online safety and follow-up are required to ensure the effectiveness of online support groups. For patients unable to safely access online support, face-to-face support groups are available in many communities. Nurses in outpatient settings such as pre-dialysis clinics or dialysis units can ask probing questions while providing care: Do you have friends you talk with? Do you feel lonely? How much time do you spend alone? What do you do when you're alone? These questions not only provide the nurse with insight on the patient's socio-emotional status, but may also foster an improved nurse-patient relationship, as the patient perceives caring from the nurse. Answers to these questions can help the nurse determine if further evaluation of social isolation, loneliness, or disengagement is needed.
Further research is needed to develop effective interventions to mitigate social isolation, loneliness, and disengagement in the elderly with ESRD. Comparative studies are needed to establish the effectiveness of online interventions and low-cost face-to-face interventions and also to determine access and safety issues with online interventions for this patient population in rural and urban areas. Quantitative studies are needed to evaluate the effects of these concepts on self-care and disease management. Longitudinal studies are needed to better understand socio-emotional issues faced over the trajectory of chronic illness. As the ESRD population continues to grow, development of interventions to improve their well-being will benefit the patient and family, the health care delivery system, and society in general.
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Julie Leming, MSN, RN, CNE, PhD Candidate, University of Texas at Tyler
Table 1: Specific Characteristics of Social Isolation, Loneliness, and Disengagement Characteristics Social Isolation Defining * Lack of quality relationships with Attributes members of a social network * Lack of engagement with others * Absence of sense of belonging * Lack of fulfilling relationships Patient * Involuntary loss of group Situation affiliation Possible Causes * Prohibitive or restrictive (Antecedents) environment or circumstances * Physical or psychological barriers Preventive * Change environment--address Considerations reasons for restrictions * Change physical limits--recovery, therapy or rehabilitation to decrease limitations * Change attitude--identify psychological issues and refer for assistance Outcomes * Negative coping skills; mental (Consequences) and psychological threats; chronic disease susceptibility; loneliness Nursing Action * Social isolation is identifiable Plan to the nurse when the patient or caregiver comments on how alone or isolated they feel. Simple referral to a support group may not work if there are mobility restrictions, so online resources might be an option Characteristics Loneliness Defining * Sense of alienation Attributes * Interpersonal feeling of isolation * Distressed reactions Patient * Reaction to loss of group Situation affiliation Possible Causes * Personal dissatisfaction with (Antecedents) the quality of interpersonal relationships * Inability to reach out or to see the need to reach out to others Preventive * Explore new group options for Considerations association * Determine if loneliness is perceived as a problem to patient Outcomes * Feeling empty; confused (Consequences) identity; distressed reactions; negative emotions; self-care deficits; passive in social interactions; low health perception; mental health manifestations; disengagement; depression Nursing Action * Loneliness is sometimes Plan identifiable through patient or caregiver comment but often must be investigated by the nurse. A variety of loneliness scales are available. Exploration into the nature of the source of loneliness can provide direction for referral and intervention. Meals on Wheels might be a low cost intervention Characteristics Disengagement Defining * Dissociation from a particular Attributes group or domain * Absence of association or bond with others Patient * Voluntary withdrawal from Situation group(s) Possible Causes * Perceived threat to self- (Antecedents) esteem or social identity * Discounting and devaluing the domain Preventive * Help client deal with threat Considerations * Understand why domain is/has become undesirable * Accept patient decision to withdraw is a possibility Outcomes * Social identity; able to (Consequences) manage stress and multiple roles; recovery of personal resources; satisfaction or dissatisfaction with social support; role conflict; feelings of failure; loneliness; depression Nursing Action * Disengagement is the result Plan of stressors or threats in the patient's life. The ability to adaptively disengage can be measured on a brief scale, or the patient and caregiver can be questioned specifically to determine if situation needs intervention. Depending on severity, referral can be made to online support groups
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