Disability Related Variables Associated with Loneliness Among People with Disabilities.

Loneliness is defined as a subjective experience and is not synonymous with social isolation, which represents a lack of involvement in a social network. According to Peplau and Perlman (1982), cognitions act as a factor mediating feelings of loneliness. These representatives of the cognitive approach hold that loneliness is the result of a perceived discrepancy between the quality and the quantity of current interpersonal relationships and those that the individual wishes to have.

For Peplau and Perlman, people may experience different types of loneliness. One categorization of loneliness is that proposed by Weiss (1973), who distinguished two types of loneliness: social loneliness and emotional loneliness. Social loneliness results from the absence of involvement in a social network, and may only be resolved by access to a satisfying social network. Emotional loneliness is the result of the absence of an important attachment or the loss of such a relationship. Young (1982) defined other ways to categorize loneliness: chronic loneliness, situational loneliness and transitory loneliness. These differentiations demonstrate the multidimensional aspect of loneliness, and indicate that loneliness is not a single entity.

The definitions mentioned above demonstrate different theoretical approaches to loneliness. Those proposed by Weiss, as well as by Peplau and Perlman, fall respectively into the interactionist and cognitive approaches. These theories are the basis of the UCLA Loneliness Scale, the instrument most frequently used in the study of loneliness (DeGrace, Joshi & Pelletier, 1993). Furthermore, these definitions fall within the approach to psychology adopted by the current study.

Loneliness is an important problem. At the beginning of the 1980s, Rubenstein and Shaver (1982) reported that each month, 35 million Americans feel lonely or excluded. This finding was concurs with findings from another survey in which 11% to 26% of the people in the United States complained of loneliness (Peplau, Russell, & Heim, 1979). Socio-demographic predictions regarding loneliness, based on prevalence rates, indicated that in year 2000, each month, 29 to 70 million Americans will feel lonely (Ernst & Cacioppo, 1999). However, investigators seem unable to identify those who are susceptible to feeling lonely. Attempts to verify the relationship between loneliness and socio-demographic characteristics, including age, sex and level of education have not been successful, though certain researchers have demonstrated a weak negative relationship between loneliness and age (Mullins, Hall, & Gutkowski, 1996). However, a recent longitudinal study reveals that certain important moments in human development, notably the transition from high school to university, may provoke feelings of loneliness (Marangoni & Ickes, 1989).

Borys and Perlman (1985) completed a meta-analysis of studies comparing loneliness among men and women. They found that men are lonelier when the UCLA Loneliness Scale (a measure that does not involve the word "lonely") is used. However, for self-rating data, the opposite was true. Furthermore, Mullins et al. (1996) found studies indicating that people with low levels of education obtain significantly higher results on an instrument measuring affective loneliness, but they also found some studies that show no relationship.

In contrast to the inconclusive studies concerning the relationship between loneliness and socio-demographic characteristics, studies are more likely to agree that a high level of loneliness negatively affects mental and physical health. Depression, anxiety and low self-esteem appear to be related to loneliness (DiTomasso & Spinner, 1997; Frieze, Bar-Tal & Carroll, 1979; Vitkus & Horowitz, 1987). Suicide, suicide fantasies, as well as alcohol and drug abuse are also positively associated with loneliness (McWhirter, 1990). Furthermore, loneliness is also related to poor social skills (Morier, Boisvert, Loranger & Arcand, 1996). Finally, physical health is negatively related to loneliness. Loneliness is a causal and exacerbating factor for physical health problems and poor immune system functioning, not to mention health problems resulting from previously mentioned substance abuse (Hojat & Vogel, 1987). In a study of heavy users of an emergency department, lonely people were more likely to make repeat visits than the general population (Andren & Rosenquist, 1985).

Despite all the knowledge acquired concerning the relationship between loneliness and mental/physical health among diverse populations, few empirical studies examine loneliness among people with physical disabilities, and even fewer are likely to include those who are living within the community. As time (extra time required to complete activities and for adapted transportation), negative attitudes of others (belief that the person is less interesting), and physical barriers (lack of access ramp and transportation) constitute important obstacles to the social integration of people with visible physical disabilities (Furrie, 1990), they are faced with social realities that differ from those who do not have disabilities. This also implies that interventions that target reducing loneliness and increasing social participation among this population should be adapted to their social reality and the obstacles involved. Verifying the existence of a relationship between loneliness and variables associated with physical disability could provide useful information concerning potential intervention objectives and strategies. Furthermore, considering that lonely people are generally less socially integrated than those who are not (DiTommaso & Spinner, 1997), and are unlikely to consult mental health caregivers (Evans & Dingus, 1987), it is important to detect people at risk for loneliness and then provide them with appropriate interventions, especially in light of the costs of loneliness on mental and physical health care systems.

Using the Disability Creation Process (DCP) model presented in Figure 1 (Fougeyrollas, Cloutier, Bergeron, Cote, & St Michel, 1999), the potential influence of physical independence, level of impairment, acceptance of disability, as well as social skills and anxiety in handicap related situations, on the social participation of people with physical disabilities was investigated.

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The DCP is a human development model that attempts to explain "the causes and consequences of disease, trauma and other disruptions to the integrity of a person" (Fougeyrollas et al., 1999, p. 3). According to this model, a risk factor is an element within an individual or the environment that is likely to cause disease, trauma of other disruption to the integrity of a person. These risk factors negatively affect personal factors (organic systems and capabilities), which inter-interact with environmental factors and life habits.

The relationship between physical independence and loneliness is important, as independence represents control and ability to choose, as well as the ability to accomplish daily activities and fulfill social roles (Rock, 1988). The DCP defines life habits as "daily living activities valued by the person or socio-cultural context according to his/her characteristics (age, sex, etc.), which ensure their survival and well-being in their society throughout their lifetime" (Fougeyrollas et al., 1999, p. 32). Life habits are accomplished according to a scale ranging from social participation (participation in social activities and roles) to handicap situation (no social participation). Within this framework, physical independence is related to social participation and integration. It is also expected to be negatively associated with loneliness based on DiTomasso and Spinner's (1997) conclusions that loneliness is negatively associated with social integration.

Verification of a link between level of impairment to organic systems and loneliness is also of interest. Organic systems ate "a group of bodily components sharing a common function" (Fougeyrollas et al., 1999, p. 32). These can be rated on a scale ranging from integrity to total impairment. According to the DCP, impairments to organic systems influence the accomplishment of life habits and social participation.

Capabilities, "the potential of a person to accomplish mental or physical activities" (Fougeyrollas et al., 1999, p. 32), also influence the accomplishment of life habits and social participation. Capabilities include attitudes and behavior such as self-esteem and social behavior. In this study, capabilities may also include acceptance of disability, social skills and anxiety. It has been shown that individuals who accept their situation conserve their self-esteem, contributing to a decrease in loneliness (Frieze et al., 1979). Acceptance of disability is associated with the positive attitude an individual adopts and is particularly important in the adaptation and social integration process (Rousseau et al., 1996). Moreover, people with physical disability confront unique situations that require special social skills (Bertrand, Morier, & Boisvert, 1997; Livneh, 1982) like as self-revelation and manifestation of common interests. The relationships between loneliness, social skills and social anxiety are well documented (DiTomasso & Spinner, 1997; Gambrill, 1995), but deserve special attention within the context of disability considering the social realities of this population.

Based on the above findings, five hypotheses were developed for this study. They were: 1) Physical independence will be negatively and significantly correlated with loneliness; 2) level of impairment will be positively and significantly correlated with loneliness; 3) acceptance of disability will be negatively and significantly correlated with loneliness; 4) social skills in social situations where disability is involved will be negatively and significantly correlated with loneliness, and 5) social anxiety in situations where disability is involved will be positively and significantly correlated with loneliness.

Method

Sample

The sample consisted of French speaking women (N = 24) and men (N = 15), aged 20 to 58 years (M = 39.3, SD = 12.4), with various visible physical disabilities. Among the types of disabilities represented, 15 people had been diagnosed with a neuromuscular disease or deformation shortly after birth (i.e. cerebral palsy or fetal alcohol syndrome), and 13 people had been diagnosed with a disabling disease in adulthood (i.e. multiple-sclerosis). The remaining participants (N = 11) had experienced a traumatic accident. The average time since diagnosis, in years, was 19.5 (SD = 15.2). Participants had an average 11.8 years of education (SD = 3.6). Exploration of this data using T-tests revealed no significant differences between sexes or diagnostic groups on the UCLA.

Excluded from the study were individuals who were deaf or blind. Others excluded were those who have difficulty understanding written text or maintaining attention for a period of an hour. Individuals who were actively receiving rehabilitation services were also excluded because the study focused on people with disabilities who are living in the community.

Variables

Loneliness: The French translation of the revised UCLA Loneliness scale was used to assess loneliness (De Grace et al., 1993; Russell, Peplau, & Cutrona, 1980). This scale, which is used in an estimated 80% of loneliness research (Oshagan & Allen, 1992), conceptualizes loneliness as a uni-dimensional emotional response to an imbalance between the level of desired and attained social contact. It contains 20 items asking the respondent to rate, from 1 (never) to 4 (always), the frequency with which a specific sensation occurs. The total score is the addition of responses (M = 37.6, SD = 10.5). A high score is associated with a high level of loneliness. Considering that the UCLA Loneliness Scale has been closely scrutinized through much research, its norms, reliability and validity are well established and accepted. It has excellent internal consistency (Chronbach alpha coefficient = .94). A correlation of .62 was obtained for a seven-month interval among college students (Cutrona, 1982) and a correlation of .85 for a two-week interval (Hartshorne, 1993), indicating its good test-retest reliability. Convergent and divergent validity has been demonstrated by consistent significant relationships between feelings of abandonment, depression, emptiness, hopelessness, isolation, and not feeling sociable (Russell, 1982), as well as its lack of relationship to theoretically dissimilar variables such as exercise and hours of sleep (Hays & Dimatteo, 1987). De Grace et al., (1993) were able to use this scale to discriminate between different levels of depression (non, mild, severe), providing support for its discriminative validity. Finally, construct validity studies have been conducted to support the psychometric qualities of this scale. Oshagan and Allen's (1992) study found that the scale assesses interpersonal friendships, as opposed to more existential feelings of sorrow and aloneness. The translation reveals similar psychometric properties.

Physical independence: The Life Habits questionnaire (Life-H), version 3.0 (question 1) was used to measure physical independence (Fougeyrollas, Noreau, & St. Michel, 1997). This instrument attempts to quantitatively establish the degree of accomplishment of life habits among people with disabilities. It contains 58 items describing various life habits (ex. eating meals and combing hair) and social roles (ex. participating within the community and volunteering). The respondent determines his/her level of accomplishment on a scale from 0 (not accomplished) to 9 (accomplished without assistance and without difficulty), with intermediate points that concern level of difficulty and type of assistance required. The score is a mean of all applicable items. A high score represents high physical independence. It has a good intra-class coefficient (.84) and a Cronbach alpha of .82, indicating good internal consistency.

Level of impairment: The PULSES Profile is a commonly used measure of functional impairment (Moskowitz & McCann, 1957). It has six questions representing six domains of physical and mental functioning, and requires a very brief interview: physical condition, upper and lower extremities, sensory components, excretory function, and mental and emotional status. For each of the items, the person is rated on a scale from 1 to 4. It has good test-retest and inter-judge reliability, and can be used to predict rehabilitation potential and to evaluate the progression of a person in their rehabilitation program. Finally, the PULSES correlates well with other measures of functional independence. This interview was administered by an undergraduate psychology student who had been trained by an occupational therapist who regularly uses the PULSES profile.

Acceptance of disability: The French translation of the Acceptance of Disability Scale (ADS, Linkowski, 1987; Rousseau et al. 1996) was used to measure acceptance of disability. Respondents must rate, on a scale from 1 (I totally disagree) to 6 (I totally agree), 50 items concerning their attitude towards their disability and people with disabilities in general. The score is the addition of responses. A high score is associated with acceptance of disability. The ADS has excellent internal consistency with a Spearman-Brown coefficient of .93 and an equal halves coefficient of .86. Construct validity is supported by the fact that people who had completed rehabilitation obtained higher scores than those who were still obtaining rehabilitation services. Convergent validity is demonstrated by significant correlations between it and self-esteem, satisfaction with social relationships, and the Attitude Toward Disabled Persons Scale (Yuker, Block & Campbell, 1960).

Social skills and anxiety related to handicap situations: The Questionnaire sur les Difficultes Sociales Reliees a la Limitation (DSLP - Social difficulties related to physical disability; Bertrand, Morier, & Boisvert, 1997) was used to measure social skills and anxiety. This questionnaire includes 15 items describing social situations where the presence of physical disabilities is involved (ex. asking for help, responding to curiosity concerning your disability). It contains two distinct sub-scales: the anxiety scale (DSLP-M) and the frequency scale (DSLP-F). For each item, the respondent must indicate on a scale from 1 to 5, their degree of anxiety (DSLP-M) or frequency/probability (DSLP-F) that they would use the social skill described. The score is the addition of their responses. A high score represents high anxiety on the DSLP-M scale, and a high score on the DLSP-F scale means that the person is not applying appropriate social skills in situations involving his/her disability(ies).

Procedure

Participants were recruited with the assistance of announcements posted on bulletin boards in areas providing outpatient services within a rehabilitation center, as well as through ads placed in various mail-outs of associations representing people with physical disabilities. Participants signed a consent form and then proceeded to complete the questionnaires. After completion of the instruments, participants were given an opportunity to provide comments, or ask questions about the research and the questionnaires. Once the study was completed, results were mailed to all participants.

Data Analyses

This study investigated the relationship between loneliness and five other variables associated with physical disability. In order to address all five research questions, two-tailed Pearson correlations were carried out between the UCLA Loneliness Scale and each of the instruments measuring the five other variables. A large effect size was expected, in light of the sensitivity of the instruments used. As such, for an alpha of .05 and power of .80, twenty-eight participants are required for correlational analyses (Cohen, 1992). Using the same coordinates, a total of 42 participants would be required for a regression analysis. A total of 39 people participated in this study, thus a standard regression was carried out for exploratory purposes only.

Exploration of the data revealed the presence of one outlier that was more than three standard deviations above the mean on the DSLP-M scale. This score was removed from analyses. All scales were normally distributed.

Results

The means and standard deviations for each scale are presented in Table 1. Correlations between the UCLA, time since diagnosis, and age were non-significant. The only significant correlation between the UCLA and a socio-demographic variable was for level of education (r = -0.42).

Table 1
Means and standard deviations for questionnaires measuring
loneliness, physical independence, level of impairment,
acceptance of disability, and social skills and anxiety related to
handicap situations.

Questionnaires            M       SD

UCLA (loneliness)       40.54   10.11
Life H (phys ind)        6.68    1.33
PULSES (impairment)     12.15    2.23
AD (acceptance)        220.92   47.63
DSLP-M (anxiety)        26.41    8.61
DSLP-F (skills)         32.03   10.95

Pearson correlations were used to identify significant relationships between loneliness and the five variables associated with physical disabilities (see Table 2). Significant positive correlations exist between the measure of loneliness (UCLA) and both social skill and anxiety sub-scales (DSLP-M and DSLP-F), while a significant negative correlation was found between loneliness and the measure of physical independence (Life-H).

Table 2
Pearson correlations between questionnaires measuring loneliness,
physical independence, level of impairment, acceptance of disability,
and social skills and anxiety related to handicap situations.

Questionnaires            1          2       3      4      5

1. UCLA (loneliness)
2. Life-H (phys ind)   -.50(**)
3. PULSES (impair)      .15       -.32
4. AD (acceptance)     -.30        .24      .17
5. DSLP-M (anxiety)     .66(**)   -.36(*)   .20   -.26
6. DSLP-F (skills)      .64(**)   -.32(*)   .09    .06   .66(**)

(*) p < .05. (**) p < .01.

For exploratory purposes, a regression was conducted to determine the unique and overlapping contribution of the three variables related to loneliness: physical independence, social skills and social anxiety. These three variables were screened for the presence of multi-colinearity. Together, they explained approximately 53% of the variance on the UCLA. The unique contributions of the DSLP-M, DSLP-F, and Life-H, based on the semi-partial correlations were 9%, 3%, and 4% respectively. Results of the regression are presented in Table 3.

Table 3
Summary of a standard regression analysis on variables predicting
loneliness

Independent   Unstandardized   Standardized   p-value      Unique
 Variable       Regression      Regression              contribution
                Coefficient     Coefficient

(Constant)         31.02                        .001
Life Habits        -1.57            -.22        .105         .04
DSLP-M
  (anxiety)          .46             .42        .021         .09
DSLP-F
  (skills)           .22             .25        .148         .03

Note: [R.sup.2] for full model = 53%

Based on the results of this study, three of the research hypotheses were retained. As expected, loneliness is negatively and significantly associated with physical independence and social skills in situations involving the person's disability(ies), as well as positively and significantly related to social anxiety in these same situations. However, the two hypotheses concerning level of impairment and acceptance of disability were rejected. Apparently, no significant relationship exists between loneliness and acceptance of disability, nor between loneliness and level of impairment.

Discussion

Results demonstrated that, among people with physical disabilities, loneliness is negatively associated with physical independence, as well as social skills and anxiety in handicap related situations. However, no relationship was found between loneliness and level of impairment or acceptance of disability. The results of the exploratory regression analysis show that physical independence and social skills related to handicap situations explain more than half of the variance of the score obtained on the measure of loneliness. A closer look at these results reveals that these variables, although overlapping in their contribution to the loneliness score variance, also have interesting unique contributions totaling approximately 16%. This suggests that all three variables have predictive value, when considered both separately and together.

Physical independence was a large contributor to the prediction of loneliness, explaining approximately 20% of the UCLA Loneliness Scale's variance according to the Pearson correlations. A unique contribution of 4% is obtained when both social skills and anxiety variables are taken into account. The DCP proposes that greater accomplishment of life habits leads to greater social participation. This parallels DiTommaso and Spinner's (1997) assertion that greater participation in society and daily activities reduces the risk for feeling lonely.

The two hypotheses concerning both social skills and anxiety related to handicap situations were retained. Social anxiety and frequency of appropriate social skills use are related to loneliness. In fact, anxiety in social situations was most closely associated to loneliness (r = .66). Although these two variables and physical independence share some of their contribution to the variance in loneliness scores, both social skills and anxiety have unique predictive value according to the exploratory regressional analysis. The results support the assertions of Morier et al., (1996), who stipulated that the presence of a physical disability requires particular social skills. They also support previous studies concerning the relationship between social skills, social anxiety, and loneliness (DiTomasso & Spinner, 1997; Gambrill, 1995). These findings demonstrate the important role of social skill capabilities in their interactions with other elements of the DCP model, thus influencing social participation.

The relationships between loneliness and level of impairment or acceptance of disability were present, but not significant. Thus, the hypotheses regarding these two variables are rejected. Three possible reasons for these finding are: 1) the relationship between these two variables may not exist; 2) the instruments or method of administration used to measure acceptance of disability and level of impairment may not be valid; 3) the limited number of participants affected the power to detect this difference.

In support of the second possibility, the PULSES profile interview was administered by a person with little experience conducting such an interview and may not have been able to detect nuances between the different levels, despite the fact that she received training. It should also be noted here that some participants considered certain items of the AD as pejorative (ex. the most important thing in the world is to be physically normal), and may have lead participants to react negatively to the questionnaire. Based on these comments, it may be that this scale does not truly measure acceptance of disability, rather stereotypes and social prejudices towards disability.

Certain limitations concerning this study should be noted. The small number of participants limited the power of this study to detect relationships with small or medium effect size, and limited the possibility to carry out analyses that control for other variables such as education. Second, the questionnaires, particularly the AD, may not measure the variable of interest or be sensitive enough to detect significant relationships. It is also possible that the terminology used (e.g. "normal", disabled) is outdated. Finally, the heterogeneity of the population, although allowing great generalization to several types of impairments, may have also been a confounding variable in the detection of these relationships.

Despite these limitations, the results of this study have interesting clinical implications. Knowing that people who are lonely are unlikely to consult for loneliness, (Evans & Dingus, 1987), and considering the costs of loneliness on mental and physical health, it is important to be able to identify those people at risk for feeling lonely. This is even more important for people with physical disabilities, for whom social integration has become a priority in social policy in Quebec (RRSS, 1994) and other places.

This study indicated that physical independence, social anxiety, and social skills are related to loneliness, and thus points to interesting elements that could possibly be included in such interventions. These include workshops and programs concerned with learning and improving social skills and reducing anxiety in handicap situations. Furthermore, since physical independence and reduced accomplishment of life habits are related to loneliness, social programs and policies concerned with adapting the environment, both physical and social, to improve access to public services (bank, church, recreational center) and social roles (e.g. employment), would be positive strategies to reduce or prevent loneliness among this population. Along the same lines, efforts could also be made to identify, among both individual and the population with physical disabilities, life habits and social roles that are not being accomplished and provide appropriate assistance (technical aid, human assistance, and adaptation) at both the population and individual level.

Additional studies are needed to corroborate the findings obtained here. These studies should include a larger sample size, thus allowing for greater power to detect relationships. This larger number of participants may also allow for examination of differences between various groups of participants based on diagnosis, sex, time since accident etc. Other studies may want to examine these variables within a longitudinal framework. Such a study may point to causal directions between loneliness and other variables. Finally, it would be interesting to observe the impact of interventions that integrate the previously proposed programs to reduce loneliness and increasing social participation of people with physical disabilities.

Authors' Note

This research project was funded by the Conseil Quebecois de la Recherche Sociale (CQRS), under the direction of Michel Pepin, Ph.D. The first author, Sandra Hopps, B.A., is a recipient of a doctoral scholarship from the CQRS. Isabelle Arseneau, Melanie Frechette and Genevieve Begin are all undergraduate students at Laval University. The authors would also like to recognize the support from the Institut de readaptation en deficience physique de Quebec.

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Sandra L. Hopps, School of Psychology, Laval University, Quebec, Qc. G1K 7P4 Canada. Email: [e-mail]