LONELINESS IN WOMEN WITH MULTIPLE SCLEROSIS
Claudia Beal, MN, RN, CNM
Alexa Stuifbergen, PhD, RN, FAAN
School of Nursing, The University of Texas at Austin
Purpose: Loneliness often is a component of the experience of chronic and disabling conditions yet it
has not been extensively studied in this context (Keele-Card, Foxall & Barron, 1993; Hopps, Pepin,
Arseneau, Frechette & Begin, 2001). The purpose of this study was to (1) assess the extent of loneliness
in a sample of women with MS, (2) examine the relationship of loneliness, social support, functional
limitation, self-rated health status, social demands of illness, and marital status and (3) assess which
variables are predictors for loneliness.
Methods: This secondary analysis reports the result of data from an ongoing longitudinal survey of
health promoting behaviors and quality of life of individuals with MS initiated in 1996. The original
investigation and this secondary analysis received approval from the institutional review board for the
protection of human subjects. Participants were recruited with the assistance of two chapters of the
National Multiple Sclerosis Society in the southwestern United States (Stuifbergen & Roberts, 1997).
Participants (n=659) were predominantly white (92%) and married (70%). The average duration of MS
was 10 years (SD=7.3) and 48% of participants reported having relapsing-remitting MS. Data were
collected by mail through a battery of self-report instruments in booklet format including a background
information sheet and measures of functional limitation (Incapacity Status Scale), social support (Personal
Resources Questionnaire 85 Part 2), social demands of illness (Demands of Illness Inventory), an item on
the Center for Epidemiological Studies Depression Scale that assessed loneliness, and one self-rated heath
status question from the Multilevel Assessment Inventory. Descriptive statistics were used to describe
sample characteristics, bivariate correlations examined the relationship of study variables, and stepwise
regression assessed which variables explained the variance in loneliness.
Findings: Half (50%) of the women reported feeling lonely at least some of the time during the last
week, and 15.5 % of participants reported feeling lonely 3-4 days a week. A moderate negative
relationship was observed between loneliness and social support (r = -.45, p < .01), and a moderate
positive relationship was found between loneliness and the social demands of illness (r = .37, p < .01).
Loneliness was significantly correlated (p < .01) with functional limitation, self-rated heath status and
marital status although the strength of the association was small (r = .20, r = -.25, r = -.20). Social support
(B = -.34, p < .05), social demands of illness (B = .21, p < .05), and marital status (B = -.09), p < .05)
accounted for 25% of the variance of loneliness.
Conclusions: The women in this sample who were not married, perceived their health less positively,
indicated less social support, and reported greater social demands of illness and greater functional
limitation were more likely to report loneliness.
Acknowledgement: This study was supported by NINR grant RO1NR03195.
Keele-Card, G., Foxall, M., & Barron, C. (1993). Loneliness, depression, and social support of patients with COPD and their
spouses. Public Health Nursing, 10, 245-251.
Hopps, S., Pépin, M., Arseneau, I., Fréchette, M., & Bégin, G. (2001). Disability related variables associated with loneliness
among people with disabilities. Journal of Rehabilitation, 67, 42-48.
Stuifbergen, A. K., Roberts, G. J. (1997). Health promotion practices of women with multiple sclerosis. Archives of Physical
Medicine and Rehabilitation, 78, S3-S9.
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