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Loneliness in Women with Multiple Sclerosis
Loneliness is an underrecognized component of the experience of chronic illness and disability. Women with multiple sclerosis (MS) may be at risk for loneliness due to social network changes that occur in the course of chronic illness. The purpose of this secondary analysis was to assess the extent of loneliness in a sample of 659 women with MS and examine the relationship of loneliness, social support, functional limitation, self-rated health status, social demands of illness, and marital status. More than half of the women in this sample reported feeling lonely. A significant association was found between loneliness and lower levels of social support, greater social demands of illness, greater functional limitation, lower self-rated health status, and marital status. These findings suggest that rehabilitation nurses and other health professionals should be aware that loneliness may be a common occurrence for women with MS and point to the need for screening procedures to identify loneliness in this population.
Multiple sclerosis (MS) is a chronic and often disabling neurological condition characterized by motor and sensory deficits related to central nervous system demyelination. It is estimated that 250,000–350,000 people in the United States have physician-diagnosed MS (Anderson et al., 2002). Of these, approximately 70% are female (Noonan, Kathman, & White, 2002). Among the many challenges faced by people with MS are changes in the social network. Alternations in family role and social roles (McReynolds, Koch, & Rumrill, 1999) and decreased participation in social activities (Mohr & Cox, 2004) often are part of the experience of MS. These social changes may contribute to the development of loneliness, which is considered an indication that a person’s social network is deficient in some important way (Perlman & Peplau, 1982).
Loneliness has implications for both physical and psychological well-being. Recent research has found an association between loneliness and alcohol use (Bonin, McCreary, & Sadava, 2000), hypertension (Hawkley, Masi, Berry, & Cacioppo, 2006), heart disease (Sorkin, Rook, & Lu, 2002), and depressive symptoms (Cacioppo, Hughes, Waite, Hawkley, & Thisted, 2006). Although well studied in the general population, loneliness has not been extensively explored in the context of chronic illness and disabling conditions (Keele-Card, Foxall, & Barron, 1993). It is identified in people with chronic obstructive pulmonary disease (COPD) (Kara & Mirici, 2004), HIV and AIDS (Cherry & Smith, 1993), hearing impairment (Kramer, Kapteyn, Kuik, & Deeg, 2002), and low vision (Foxall, Barron, Von Dollen, Jones, & Shull, 1992). A literature search of the Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, and Sociological Collection databases revealed few studies on loneliness in people with MS and none that focused on women.
The purpose of the secondary analysis was to determine whether selected correlates of loneliness reported in this literature are applicable to women with MS. Specific aims were to assess the extent of loneliness in a sample of women with MS; examine the relationships between loneliness, social support, functional limitation, self-rated health status, social responses of illness, and marital status; and examine the extent to which social support, functional limitation, self-rated health status, social responses of illness, and marital status are predictive for loneliness.
Peplau and Perlman (1982) emphasized the difference between actual and desired social relationship in their conceptualization of loneliness. As described by these theorists, loneliness is “an unpleasant experience that occurs when a person’s network of social relationships is deficient in some important way, either quantitatively or qualitatively” (Perlman & Paplau, 1982, p. 31). In other words, a person may think that his or her social network lacks an appropriate number of people or that the social network in some way is not providing what the person thinks it should.
Predisposing factors and precipitating events may create a vulnerability to loneliness (Peplau & Perlman, 1982). Predisposing factors include characteristics related to the individual, situational factors, and cultural values. Precipitating events, such as geographic relocation, may instigate changes in social relationships that may result in loneliness. A chronic illness such as MS may be considered either a predisposing factor or a precipitating event in that the diagnosis itself can trigger changes in the social network, as can the ongoing experience of illness.
The current study draws on the extant literature on loneliness in people with chronic illness and disability to conceptualize possible correlates of loneliness in women with MS. These include social support, functional limitations, marital status, and the social aspects of chronic illness.
Thoits (1982) defined social support as “the degree to which a person’s basic social needs are gratified through interaction with others.” (p.147) Few studies have examined the relationship between social support and perceived loneliness in people with MS. Gulick (2001) reported that social support serves as a mediating factor between emotional distress, of which loneliness is a component, and activities of daily living in people with MS. Studies of loneliness in the context of other chronic conditions indicate that perceived satisfaction with social support is related to loneliness. Keele-Card et al. (1993) found that people with COPD who reported greater satisfaction with social support felt less lonely than those who reported a lesser degree of satisfaction. Another study of people with COPD reported a negative relationship between perceived social support from family and friends and loneliness (Kara & Mirici, 2004). HIV-positive women who perceived that they had high levels of support from their family experienced significantly less loneliness in the past year than those who perceived lower levels of support (Serovich, Kimberly, Mosack, & Lewis, 2001).
The term functional limitation as used in this analysis refers to a subjective assessment of the extent of difficulty in physical functioning. Although the course of MS is highly variable, it may have a pronounced effect on physical functioning over time (Lublin & Reingold, 1996). It is estimated that two decades after diagnosis one third of people with MS develop motor impairment severe enough to necessitate mobility assistance (Schapiro, 1991). Other causes of functional limitation in MS are bowel and bladder dysfunction, fatigue, dizziness, and vision problems (Britell, Burks, & Schapiro, 2000). Affective disorders such as depression and anxiety also may contribute to functional limitation (Mohr & Cox, 2004).
The functional limitations associated with chronic illness may disrupt participation in accustomed social activities. For example, people with MS reported difficulty in planning social activities because of uncertainties about their health (Stuifbergen, 1992), and women with fibromyalgia reported that fatigue and the inability to anticipate the future state of their health contributed to their withdrawal from social activities (Asbring, 2001). Such social withdrawal may contribute to loneliness (Keele-Card et al., 1993). However, the literature reveals conflicting findings about the relationship between functional limitation and loneliness.
Kim (1999) reported that older Korean-born women living in the United States with higher scores on a measure of loneliness scored lower on their ability to perform instrumental activities of daily living. In a study of older adults with one or more chronic conditions, Badger (1993) found that those with greater physical impairment reported greater loneliness than those who were less impaired. Although higher rates of loneliness were associated with greater disability in a study of older adults, level of disability accounted for only 1% of the variance for loneliness (Mullins, Elston, & Gutkowski, 1996). No relationship between loneliness and level of functional impairment was found in a study of young and middle-aged people with congenital neuromuscular disease, disabling chronic conditions, and disability caused by trauma (Hopps, Pépin, Arseneau, Fréchette, & Bégin, 2001). In this study, greater levels of physical independence were significantly associated with less loneliness (Hopps et al.). The authors suggest that despite the level of impairment, if people were able to be physically independent they were more like to engage in social activities that had a protective effect against loneliness.
Social Responses of Illness
Packard, Haberman, Woods, and Yates (1991) described social responses of illness as interpersonal difficulties experienced by people with a chronic condition related to other people’s response to the illness and disruptions in roles and relationships. Other people’s response to the illness includes the ability of the network to provide needed support and the extent to which the network may add to the stress of illness (Packard et al.). Disruptions in social roles are changes in the ability to fulfill duties as a parent, spouse, employee, or community volunteer. The perception on the part of people with a chronic condition that other people act differently toward them, do not understand them, are overprotective, or need assistance to accept the illness are examples of the disruptions in relationships that may arise in the course of chronic illness.
There is evidence that these social responses are part of the experience of people with MS. Stuifbergen (1992) found that most people with MS felt that others did not understand what they were experiencing. Other studies reported deteriorating relationships with spouses (Mohr et al., 1999) and social stress related to occupation and family relationships (Gilchrist & Creed, 1994).
Several authors suggest that the social changes associated with chronic illness may contribute to loneliness, but empirical evidence for this link is lacking. Mairs (1996) noted that negative reactions toward the disabled sometimes lead to social isolation, or a lack of social contacts, and Miller (1985) posited that social isolation may lead to loneliness. Keele-Card et al. (1993) proposed that feeling separate or apart from others contributes to loneliness in chronic illness.
There is ample evidence in the literature of the protective effect of marital status on loneliness in the general population. Being married was correlated with less loneliness in a cross-national study (Stack, 1998) and a multicountry meta-analysis (Pinquart & Sorensen, 2001). The protective effect of marriage may result from perceived social support provided by a spouse. Stuifbergen (1992) distinguished between types and sources of support in people with MS and found that spouses were the primary source of emotional and tangible support. Barron, Foxall, Von Dollen, Jones, and Shull (1994) reported no difference in extent of loneliness between married and nonmarried older adults with low vision, but the married, nonlonely participants indicated that their spouse was a source of support more often than married people who were lonely. Married people with a variety of chronic conditions reported more available social support than unmarried people, and social support was a mediating factor between marital status and better mental heath (Sherbourne & Hays, 1990).
This is a secondary analysis of data from 659 women aged 18–95 (M = 47) collected at Time 1 (1996) of a longitudinal survey of health-promoting behaviors and quality of life of people with MS. Descriptive statistics were used to describe sample characteristics and findings on the instruments. Pearson correlations were used to examine the relationship between study variables. Stepwise regression analysis was used to examine which combination of variables best explained the variance of loneliness. The significance level was set at .05 for all analyses.
Participants were recruited in the southwestern United States through two chapters of the National Multiple Sclerosis Society. Recruitment procedures have been previously described (Stuifbergen & Roberts, 1997). The original investigation and this secondary analysis received approval from the institutional review board for the protection of human subjects. Survey questionnaires containing a battery of instruments were mailed to participants. The survey was in booklet form, with enlarged print size and spacing to enhance readability. If not returned within 30 days, another copy of the survey was sent. Of the 936 surveys that were mailed, 834 were returned. Because of missing data and failure to meet study criteria, 27 were excluded, leaving a total of 807 for analysis. Participants received a $5 gift certificate and a handwritten thank-you note for completing the questionnaire (Stuifbergen & Roberts, 1997).
Instruments for this study were a background information sheet containing demographic information and measures of loneliness, functional limitation, social support, social responses of illness, and self-rated health status.
A background information sheet collected information on age, gender, ethnicity, education, employment, and marital status. Respondents indicated which type of MS they had using descriptions provided in the test booklet.
Item 9 on the Center for Epidemiological Studies Depression Scale (CES-D) (Devins & Orme, 1985) assessed frequency of loneliness. Participants were asked to report the extent of loneliness for the past week. The item “I felt lonely” is scored on a four-point scale ranging from “Rarely or none of the time” (less than one a day in the past week) to “Most or all of the time” (5–7 days in the past week). A similar self-labeling loneliness question was found to correlate highly with the Revised UCLA Loneliness Scale (Russel, Peplau, & Cutrona, 1980), a widely used instrument in loneliness research.
The Incapacity Status Scale (ISS) (Kurtzke, 1981) was used to determine the extent of functional limitation. The scale was modified to a self-administered format from a structured interview for the original study (Stuifbergen & Roberts, 1997). The ISS contains 16 items rated on a five-point scale from 0 (normal functioning) to 4 (complete inability). Among the items are those that assess functioning related to ambulation, vision, and ability for various aspects of self-care. Total scores range from 0 to 64, with higher scores indicating greater perceived functional limitation. Kurtzke provided data supporting the construct validity of the measure. Cronbach’s alpha for the ISS in this study was .87.
Self-Rated Health Status
One item of the self-rated health subscale of the Multilevel Assessment Inventory (Lawton, Moss, Fucomer, & Kleban, 1982) was used to assess self-rated health status. Study participants were asked to rate their overall health as “excellent,” “good,” “fair,” or “poor.” Reliability and validity evidence was gathered with six samples of older adults. The self-rated health subscale had an alpha coefficient of .76 and test–retest reliability of .92 (Lawton et al., 1982). Validity evidence was provided using the criterion group approach (Lawton et al.).
The Personal Resource Questionnaire (PRQ) Part 2 (Weinert & Brandt, 1987) measured social support. Part 2 of the PRQ is a 25-item Likert scale scored from 1 (strongly disagree) to 7 (strongly agree). Total scores range from 25 to 175. Higher scores indicate greater perceived social support. Reliability and validity evidence was gathered with a sample of 100 adults. The test–retest reliability coefficient was .72 (Weinert & Brandt, 1987). Construct validity evidence was obtained using Pearson correlations between the PRQ and mental health measures (Weinert & Brandt). Cronbach’s alpha of .91 was obtained for the PRQ for this sample.
Social Responses of Illness
The Social Relationships Subscale (items 49–58) of the Demands of Illness Inventory (DOII, modified version) (Haberman, Woods, & Packard, 1990) assessed the social responses of illness. The subscale consists of 10 items rated on a five-point scale ranging from 0 (not at all) to 4 (extremely). An example of one item is “As a result of my MS, I go out with friends less often.” Total scores range from 0 to 40, with higher scores indicating greater social demands of illness. Haberman et al. (1990) reported evidence of internal consistency reliability of the modified scale, and all DOII subscales had alpha coefficients greater than .70. The contrasted-group method of validity testing provided evidence of validity. Cronbach’s alpha of .89 was obtained for the Social Relationships Subscale in this study.
A majority of the women were white (92%), with 4% African American and 2.6% Hispanic. Seventy percent reported being married. Forty percent reported full- or part-time employment, and 31% indicated being unemployed due to disability. Educational levels were fairly high, with 45% reporting 13 or more years of education. The average duration of MS was 10 years (SD = 7.3) and ranged from less than 1 year to 46 years. Relapsing–remitting MS, with symptoms that change in severity over time, was reported by 48% of participants. One third indicated that they had chronic progressive MS, characterized by symptoms that steadily worsen over time.
Most participants reported few problems with activities of daily living such as bathing, personal grooming, dressing, and feeding. Almost all participants (98%) reported some degree of fatigue, and 48.7% indicated that their fatigue was frequent or disabling. A majority of participants also reported some degree of difficulty with vision (86%) and bowel function (73%). In addition, 68% reported feeling sad, nervous, or angry to some extent. Despite the presence of a chronic and potentially disabling condition, 52% of the women reported their health status as good or excellent.
With regard to the social responses of illness, individual items on the DOII indicated that the majority of respondents reported, to at least a moderate degree, that they were less social as a result of having MS (61%), it was difficult to plan social activities (59%), and others did not understand what they were going through (68%). Eighty-seven percent reported that to some extent they had to help others understand their illness, and two thirds indicated that others treated them differently as a result of MS.
The Incidence of Loneliness in Women with MS
Half (50%) of the 659 women reported feeling lonely at some time in the past week. Loneliness was reported a moderate amount of the time (3–4 days in the past week) by 15.5% of participants and most or all of the time (5–7 days in the past week) by 8.3% of participants.
The Relationship of Loneliness, Social Support, Functional Limitation, Self-Rated Health Status, Social Responses of Illness, and Marital Status
Table 1 presents the Pearson correlations between the study variables. Loneliness was significantly correlated (p < .01) with all variables, although the correlations with functional limitation, self-rated health status, and marital status were small. A moderate negative relationship was observed between loneliness and social support (r = (-).45, p < .01), and a moderate positive relationship was observed between loneliness and social responses of illness (r = .37, p < .01).
Social Support, Social Responses of Illness, and Marital Status Predict Loneliness
A stepwise regression analysis was conducted with social support, functional limitation, self-rated health status, social responses of illness, and marital status as predictors and extent of loneliness as the dependent variable. The criteria for entry into the regression equation were set at the .05 level of significance. Self-rated health status and functional limitation did not contribute significantly to the variance. Social support ((beta) = (-).34, p < .05), social demands of illness ((beta) = .21, p < .05), and marital status ((beta) = (-).09, p < .05) accounted for 25% of the variance of loneliness.
Findings from this study suggest that loneliness is not an uncommon component of the experience of women with MS, occurring most often in those who reported lower levels of social support, greater functional limitation, lower self-rated health status, and greater social demands of illness and those who are not married. Half of the women in this study reported feeling lonely in the past week, and about one quarter felt so at least 3 days a week. This compares with a sample of 314 older adults with a variety of chronic conditions including arthritis, hypertension, and heart disease in which 29.3% of female participants reported loneliness on two forms of the CES-D (Zauszniewski, Morris, Preechawong, & Chang, 2004). The actual rates may be less important than the fact that loneliness, which is a cause of psychological distress linked to adverse health effects, compounds the challenges associated with chronic disabling conditions and may place affected people at risk for additional health problems.
A primary aim of this study was to examine the extent to which correlates of loneliness identified in the literature were applicable to women with MS. This analysis provided more evidence of the inverse association of social support and loneliness. These findings point to the need for those who interact with women with MS to assess social support in women with MS and help them identify and strengthen interpersonal resources. This is especially important because women with MS were reported to perceive less social support than men with MS (Gulick, 1994).
Woods, Haberman, and Packard’s (1993) conceptualization of social responses of illness includes illness-related events and challenges associated with the social network. As indicated by responses to the DOII, a majority of the women in this sample experienced alterations in social relationships as a result of their illness. In addition, those who experienced greater social demands reported more loneliness. This finding reinforces the view that a sense of estrangement from others often accompanies prolonged illness. These findings also raise questions about societal attitudes toward chronic illness and disability.
Although an association between greater functional limitation and more loneliness was found, the strength of the association was small. Because this particular sample did not report a high degree of functional limitation generally, a more robust association may be found in a sample with more extensive limitations. A slightly stronger association was found between self-rated health and loneliness, suggesting that the measure of functional limitation used in this study did not adequately capture all dimensions of health status. This finding was consistent with a previous report that self-rated status was a stronger predictor of loneliness than a disability scale (Mullins et al., 1996).
The bulk of the literature on loneliness in the general population reveals that being married is associated with less loneliness. The association was not strong in this sample, but the correlation between loneliness and marital status was in the expected direction, with married women reporting less loneliness. Married women also reported more social support. A previous study (Stuifbergen, 1992) found that spouses were the primary source of support for those with MS. If that were true for this sample, the fact that low social support was associated with greater loneliness may indicate that the marital relationship was not providing needed support for some of the women. This could indirectly account for the weak association between martial status and loneliness in this sample. The fact that married, nonlonely people with low vision indicated that their spouse was a source of support more often than married people who were lonely (Barron et al., 1994) provides additional support for this explanation.
The finding that greater functional limitation was significantly correlated with less social support confirms a previous study that found less social support with increasing physical disability among those with MS (O’Brien, 1993). One explanation for this finding may be that physical impairment affects one’s ability to participate in social activities and thus maintain social ties (O’Brien). Another explanation might be that as people become more physically limited, their social networks lose the capacity to provide needed assistance. Healthcare providers interacting with women with MS should be aware that social relationships and support may deteriorate with advancing impairment.
These findings should be interpreted with caution because the original study used a convenience sample, and it is not known how self-selection bias may have influenced outcomes. Also, the majority of participants were Caucasian, reflecting the demographics of MS, and the results may not be applicable to women of color with MS. This secondary analysis was obviously limited to the variables for which data were collected, in particular the single-item measure of loneliness. Several researchers have posited that loneliness itself is stigmatizing, and people may be reluctant to admit that they are lonely (Perlman & Joshi, 1989). Because of the potential for this type of self-disclosure bias, several measurement instruments purposely do not contain the word loneliness. However, women were reported to be more likely than men to admit to feelings of loneliness (Borys & Perlman, 1985), and other studies have used direct measures (Foxall & Ekberg, 1989). Therefore, using a direct measure of loneliness is not considered a significant limitation to this analysis.
The results of this analysis indicate that rehabilitation nurses in both inpatient and community settings should be aware that women with MS may experience loneliness, and nurses should assess for this distressing emotional state. However, because of its subjective nature, loneliness often is not identified and therefore not addressed. Social isolation, often a precursor for loneliness, may be more easily recognized. Lubkin and Larsen (2002) identified objective criteria for social isolation including negativity, involuntary solitude, and a qualitative and quantitative reduction in the social network. These criteria could be used as the basis for strategies to identify those at risk of loneliness. After loneliness is identified, rehabilitation nurses should make referrals to programs that aim to increase social participation. These programs have shown efficacy in reducing loneliness. For example, Stevens (2001) reported that loneliness in older women decreased after the women participated in a program designed to improve their skills in developing new friendships and strengthening existing ones. Nurses may collaborate with mental health practitioners and social workers to initiate such programs if they are not available.
This study was supported by Grant R01NR03195, National Institute of Nursing Research, National Institutes of Health.
About the Authors
Claudia C. Beal, MN RN CNM, is a doctoral student at the University of Texas at Austin School of Nursing. Address correspondence to her at University of Texas at Austin, 1700 Red River Drive, Austin, TX 78701-4710. She may be contacted at firstname.lastname@example.org
Alexa Stuifbergen, PhD RN FAAN, is a professor at the University of Texas at the Austin School of Nursing.
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