Help-seeking behavior among people with disabilities: results from a national survey
Shari P. Willis
Disability presents a potentially significant life stressor to individuals who experience it (Livneh & Antonak, 1997; Vash, 1994). As a result, there is a substantial body of literature on the psychological effects of chronic illness and disability. Some of this literature is descriptive, based on clinical records or anecdotal reports that describe the process of individual reactions to events such as sudden disability or diagnosis of chronic illness (V ash, 1981; Wright, 1983). Other literature examines the relationship between psychosocial stressors and coping strategies in order to explain the mechanisms through which adaptation occurs (Billings & Moos, 1981; Hanson, Buckelew, Hewitt, & O’Neal, 1993). Regardless of the specific approach used to describe or explain the disability experience and adjustment process, there is general agreement that disability and its consequences may be stressful enough to require intervention or support in order to help the individual to manage it (Moos, 1984; Zeidner & Endler, 1996).
Along with the literature describing psychosocial reactions to chronic illness and disability, a number of empirical studies have described individual and disability characteristics that appear to be associated with successful coping outcomes (e.g., Crewe, 2000; Felton & Revenson, 1984). These studies have explored, for example, how type and severity of disability are related to adjustment (Crewe & Krause, 1991; Kendall & Terry, 1996), and the relationship of adjustment to other individual factors such as personality and coping style (Livneh, 1999; Lustig, Rosenthal, Strauser, & Haynes, 2000). Other studies have looked at how factors such as counselor characteristics (Rubenfeld, 1988) or the timing and nature of counseling interventions (Livneh, 1991; McDowell, Bills, & Eaton, 1991; Wright, 1983) contribute to outcomes. In general, the most important findings from these studies are that the severity and type of disability are not necessarily related to coping or long-term adjustment (Livneh, 1999; Wright, 1983), and that certain individual personality characteristics, together with environmental supports, appear to be most strongly associated with adjustment outcomes (Hershenson, 1998; Moos & Shaeffer, 1984; Shontz, 1977).
As is evident from this brief review, there is an impressive body of literature describing the psychological effects and consequences of chronic illnesses and disability, but little if any research examining the extent to which individuals who experience these stressors seek help in managing them. The paucity of research is surprising, given that several studies have examined help seeking behaviors and utilization patterns of other “high risk” groups, such as immigrant populations (Peifer, Hu, & Vega, 2000); ethnic minority groups (Diala et al., 2000); and some subgroups of individuals with disabilities, particularly people with mental retardation (Dorn & Prout, 1993).
For many of these groups, information on help-seeking behaviors and patterns of utilization of support services has informed community and mental health planning efforts and contributed to recommendations regarding service configuration (Piefer et al., 2000). In the same vein, information on help-seeking behaviors among people with disabilities might be particularly useful for program planning, and policy development and reform for this population, particularly within the context of the Americans with Disabilities Act of 1990 (ADA) and for individuals dealing with managed health care and Social Security. For counselors and advocates, information on help-seeking behaviors could support program development, community advocacy efforts, and service delivery models.
Although several studies have examined the relationship between mental health disorders and physical functioning in the general population (i.e., Craig & Van Netta, 1983; Wells, Golding & Burnam, 1988), we were unable to locate any articles that reported on the help seeking behavior of persons with disabilities in a nationally representative sample. The purpose of this study, therefore, was to describe the help-seeking behaviors of persons with disabilities within such a sample and examine the extent to which help seeking was associated with work limitations while controlling for other demographic variables, such as race/ethnicity or health insurance status, that research suggests are related to help seeking. This information is important to rehabilitation counselors, who specialize in the psychosocial concerns of persons with disabilities; to other community and mental health counselors who must address availability and accessibility concerns brought about by recent changes in social policy and law; and to the mental health practitioners in diverse settings who are increasingly called upon to help clients cope with the demands of chronic illness and disability.
The 1998 National Health Interview Survey (NHIS) included face-to-face interviews in a nationally representative sample of nearly 40,000 households. The survey provides data on the health and other characteristics of about 100,000 individuals in the civilian, non-institutionalized population. In this study, we analyzed data from the 1998 NHIS person-level data file in conjunction with data from a supplementary Adult Prevention Questionnaire. This questionnaire, which measured progress toward National Health Objectives for the year 2000, was administered to 32,440 households in all 50 states and the District of Columbia. (1) We merged the prevention data with the base data file to create the data set for this study. Our final data set included a sample of 31,258 who responded to both the NHIS and the supplementary Prevention Questionnaire.
In this study, we were interested in the relationship between disability-related work limitations and help-seeking behavior. The general NHIS questionnaire provided a measure of work limitations. The questionnaire allows an adult family member to serve as a proxy respondent for other household members who are unable to complete the survey. The data regarding work limitations are therefore based on information provided by either the sample adult or by a proxy respondent.
The 1998 NHIS questionnaire included two items related to work limitations. The first question asked whether an identified adult was unable to work due to a physical, mental, or emotional problem. If the answer to this question was yes, the respondent was coded as unable to work. The second item asked whether the respondent was limited in the kind or amount of work he or she could do because of a physical, mental or emotional problem. Respondents answering yes to this question were considered to have a work limitation.
We used two items from the Prevention Questionnaire to measure help-seeking behavior and the incidence of serious personal problems. The first item asked whether the respondent had experienced a serious personal or emotional problem during the past 12 months. The second asked whether the respondent sought help for any personal or emotional problems from a therapist, counselor, or self-help group. For this study, persons who responded yes to the first question were considered to have a serious personal or emotional problem, and those who responded yes to the second item were considered to have sought help for the problem. The Prevention Questionnaire, unlike the general questionnaire, does not allow for proxy respondents.
The NHIS uses a complex multistage sampling design (Botman, Moore, Moriarity, & Parsons, 2000). Approximately 1,900 primary sampling units (PSUs) were stratified by socio-demographic criteria; the probability of each PSU’s selection was proportional to its population size (Centers for Disease Control and Prevention, 2000). Blacks and Hispanics were over-sampled to provide adequate numbers for analyses.
We incorporated the features of the sample design into our data analyses. Because the data are based on a sample, which was weighted to yield national population estimates, our statistical estimates are subject to sampling error. We used SUDAAN (Research Triangle Institute, 2001), a statistical package designed to handle complex samples, to compute standard errors for the data analyses.
In addition to the data on help seeking, the dependent variable in this study, and the work limitations covariate or predictor variable, we included in our analyses other variables such as sex, age, race/ethnicity, and health insurance coverage that are known to be related to the use of counseling services. We first conducted univariate analyses to determine the extent to which work limitation was associated with serious personal or emotional problems and help-seeking behavior. We then used logistic regression analysis to examine the association between work limitation and help seeking while controlling for the effects of sex, race, age, and health insurance. Logistic regression is an analytic technique widely used in prediction studies when the outcome measure (or the dependent variable) is categorical or binary (such as yes/no). Logistic regression is a powerful analytic tool in prediction studies because it provides an “odds ratio”, which is an estimate of how much more likely (or unlikely) it is for the outcome to be present among those who exhibit a certain characteristic (such as being able to work) compared to those who don’t (being unable to work). The reader is referred to Hosmer and Lemeshow (2000) for an excellent description of applied logistic regression.
Table 1 shows the distribution of the demographic, disability, and help seeking variables in the study. Fifty-six percent of the sample was female, and nearly 68% were White, non-Hispanic. The NHIS demographic questionnaire does not distinguish between White and non-White Hispanic. Slightly more than half (52%) were in the 18-44 age range. About 15% of the sample reported having no health insurance coverage. Just over 8% of respondents were reported as unable to work due to a chronic condition; another 5.5% were reported as limited in the kind or amount of work they could do. More than 14% of the sample reported having a serious personal or emotional problem in the past 12 months, and 7% reported seeking help for such a problem from a therapist, counselor, or self-help group.
Chi-square analyses indicated that individuals with work limitations reported significantly higher rates of serious personal or emotional problem in the past 12 months [PHI] = .166, p <.001). Moreover, those with work limitations also reported significantly higher rates of helpseeking ([PHI] =. 125,p <.001).
Is this higher rate of help seeking among respondents with work limitations explained by their higher reported rate of personal or emotional problems? To control for this possibility, we limited the sample to respondents who reported a serious problem in the past year (n = 4,506). Following the procedures recommended by Hosmer and Lemeshow (2000), we then used logistic regression analysis to examine the relationship of work limitation to help seeking while controlling for four other covariates: Health insurance status, sex, age, and race/ethnicity.
Table 2 illustrates the results from the logistic regression analysis. Work limitation continued to be significantly related to professional help seeking among respondents who reported a serious personal or emotional problem, even after controlling for the other covariates.
Being unable to work was most strongly associated with help seeking; these respondents were nearly 2 1/2 times more likely to seek help than were those with no work limitation. Respondents who were limited in the kind or amount of work they could do were about 1.6 times more likely to seek help.
Several other covariates were also associated with help seeking. Women were slightly more likely than men to seek counseling. Older respondents were less likely to seek help; those aged 65 or older were only about 16% as likely to seek help than those aged 18 through 44. Blacks, Hispanics, and respondents of other races were all less likely than Whites to seek help. Finally, respondents who lacked health insurance were about half as likely to seek help than were those with insurance. The logistic regression model correctly classified 95% of cases.
This study has several important limitations. Because the question about help seeking does not distinguish between counselors and self-help groups, it is unclear how many respondents sought help from one source rather than the other. Thus, our respondents include an unknown number of people who attended meetings of self-help groups rather than seeking help from a professional counselor. In addition, the structure of the NHIS required that we use self reported data on problems and help seeking in conjunction with work-limitation data that may have been reported by a proxy family member. Finally, some caution should be exerted in data interpretation given the sampling year (1998), the last year for which data was available on the specific research questions that interested us for this study.
These limitations notwithstanding, our findings provide important information about the extent of help seeking among a nationally representative sample of people with work limitations. A key finding is that people who reported work limitations due to a chronic medical condition or disability were significantly more likely than those without work limitations to seek help from a counselor, therapist, or self-help group. This relationship was most pronounced among people who were completely unable to work: Those respondents were about 2 1/2 times more like to seek help than were those without work limitations. This finding is consistent with the literature suggesting that disability, especially when it imposes major functional limitations on the capacity to work, involves significant psychosocial stressors that may be partially ameliorated through supportive counseling. Since it is likely that our respondents sought help from all types of providers, this finding also suggests that knowledge of disability-related issues is important for professional counselors of all specialties.
Another significant finding is that more severe work limitations were associated with greater rates of help seeking. This finding may underscore the centrality of work in peoples’ lives. It may also suggest that greater functional limitations are accompanied by more severe psychosocial stressors, or at least that people with greater work limitations may tend to perceive their psychosocial stress as higher (Conyers, Koch, & Szymanski, 1998).
The fact that the incidence of help seeking was highest in the 18-44 age range, the prime working age group, may strengthen confidence in the relationship between work limitations and help seeking. It is also possible that young adults, among whom the incidence of disability is lower than in other age groups (Krause, Stoddard & Gilmartin, 1996), may experience the resulting functional limitations as more problematic than do other age groups, as fewer of their peers report disabilities when compared to other age groups. Moreover, the adjustment process for younger adults may be more difficult, as functional limitations may intrude dramatically on expected developmental tasks during this stage, such as developing a career. The voluminous literature on reaction to disability has discussed the factor of age of onset as a significant variable in adjustment (Livneh, 2001). Finally, the higher incidence of help seeking among younger respondents may simply reflect age-related differences in help seeking among the general population (e.g., Horwitz & Uttaro, 1998).
Although our findings generally held true across subgroups of respondents as defined by sex, age, and race/ethnicity, the strength of those relationships varied by group. Women, for example, were slightly more likely than men to report seeking help, a finding that is consistent with the general counseling literature (e.g., Parslow & Jorm, 2000). There were also racial/ethnic differences in the frequency with which respondents reported seeking help. Racial/ethnic minority participants sought support at significantly lower rates than did White participants. While this is again consistent with the literature (e.g., Alvidrez, 1999; Cheung & Snowden, 1990; Leong, 1994), it may raise questions about access to and availability of professional counseling for racial/ethnic minorities. Barriers that have been identified in the mental health research literature include cultural differences, stigma, differential course of treatment and differential treatment outcomes (Snowden, 2003; U.S. Department of Health & Human Services, 2001). Respondents without health insurance were also less likely to seek help, a finding that is congruent with research suggesting a link between the lack of health insurance coverage for mental health treatment and premature termination of such services (Edlund et al., 2002).
Differences in the help-seeking behavior of people with and without work limitations may be explained in part by the fact that respondents with disabilities were more likely to report a serious personal or emotional problem than were nondisabled respondents. Respondents who were unable to work at all were the most likely to report such a problem. This is an interesting finding, as it appears to contradict much of the psychosocial literature that has generally suggested that severity of disability and psychosocial distress are independent of one another (e.g., Shontz, 1977; Wright, 1983; Livneh, 2001).
One possible explanation for this apparent contradiction is that the NHIS relies on the perceptions of the respondent (or a proxy family member) regarding the work limitations imposed by an impairment. Presumably, then, there should be a correlation between perceptions of limitations and corresponding reports of psychosocial stress; that is, the more an individual experiences his or her disability as personally incapacitating, the more likely it is that he or she will experience distress. An individual could have a chronic medical condition and yet not report any work limitations; this was true of about 4% of our sample. However, it seems likely that many significant impairments do result in work limitations, and that there is a relationship between the severity of an impairment and the individual’s experience of psychological distress. If this were the case, it would make sense that persons with disabilities seek assistance at greater rates than their nondisabled peers in large part because of problems that are related to their disability status.
Implications for Counselors
These findings have important considerations for professional counselors. The first is the need to make accessible and affordable counseling available to people with chronic health impairments, including those with disabilities that result in a complete inability to work. Although we were unable to discern the extent to which people with disabilities sought help from professional counselors rather than from self-help groups, the fact that so many people did seek help underscores the need to ensure that counselors are available to provide it.
Moreover, the fact that more than a quarter of the respondents with work limitations reported a personal or emotional problem should serve to alert counselors in all settings to be vigilant for signs of stress and depression among clients with chronic health impairments, and to make appropriate referrals for services. Prior research has suggested that people with disabilities, particularly women, report higher levels of stress and depression when compared to the general population (U.S. Department of Health & Human Services, 2000). Thus, access to services is a critical issue among this population.
Another implication of our findings is that counselors in all settings should expand their awareness of diversity issues to include disability as a potential source of discrimination and stigma. This is particularly important because some studies have demonstrated that people with disabilities are treated differently in health care settings (e.g., Nosek, 2000), and that women with disabilities in particular are frequently not offered the same level of preventative health care as are their nondisabled counterparts (e.g., Nosek & Howland, 1997). Moreover, recent findings regarding disparities in rehabilitation service provision and service outcomes for ethnic minorities with disabilities also underscore the need for counselors to increase their awareness of diversity issues. For example, studies have found that African Americans with disabilities are less likely to be determined eligible for VR services, and, that once they are in the system, less likely to achieve competitive employment closure (Capella, 2002; Hayward & Schmitt-Davis, 2003). Such findings are of great concern given the research demonstrating a correlation between disability and stress (Crew & Clarke, 1996; Fink, 1967; Turner & Wood, 1985), particularly for ethnic minorities and women whose stress may be exacerbated by environmental conditions and social attitudes. As a result, counselor may need to adapt their practices to match the cultural expectations and behaviors of these individuals. Moreover, counselor education programs should increase awareness of both attitudinal issues and of the accessibility provisions included in the ADA.
A third implication for practice is that counselors should be aware of social and economic realities that may present obstacles to adjustment among people with disabilities, such as lack of education, inadequate access to insurance coverage, and poverty (McNeil, 1997). These factors may exacerbate the stresses of daily living, and certainly call for increased professional and nonprofessional intervention. Of course, these barriers may also affect access to services; in this study, uninsured respondents were only about half as likely to seek help as were those with health insurance.
Implications for Research
The literature describes several approaches to psychosocial counseling for people with chronic illness and disabilities (i.e., Livneh, 1991; Thomas, Butler, & Parker, 1987), but the field would benefit from further research into the effectiveness of different approaches. Moreover, the heterogeneity of this population requires that counselors remain aware of psychosocial issues and concerns that may be unique to special subpopulations of people with disabilities, such as members of specific cultural and ethnic groups. Finally, the likelihood that age, sex, and race/ethnicity interact with disability status to influence help-seeking behavior requires that both researchers and practitioners tuna their attention to how to improve service accessibility, effectiveness, and outcome. for all persons with disabilities.
Sample Characteristics (N = 31,258)
Male 13,663 43.7
Female 17,595 56.3
White, non-Hispanic 21,148 67.7
Black, non-Hispanic 4,091 13.1
Hispanic 4,995 16.0
Other 1,003 3.2
18-44 years 16,156 51.7
45-64 years 8,948 28.6
65 or older 6,154 19.7
Health insurance status
Insured 26,604 85.1
Uninsured 4,620 14.8
Work limitation due to a chronic condition
Unable to work 2,539 8.2
Limited in kind or amount of work 1,695 5.5
No limitation 26,808 86.4
Serious personal or emotional problem in
past 12 months
Yes 4,506 14.4
No 26,680 85.6
Sought help from a therapist, counselor,
or self-help group
Yes 2,174 7.0
No 29,084 93.0
Logistic Regression Modelfor Helpseeking (N = 4,506)
Variable B SE Wald P Ratio
Unable to work .882 .126 96.420 .000 2.416
Limited in kind or amount of work .459 .090 13.347 .000 1.582
Female 176 .073 5.817 .016 1.193
Age 45-64 -.472 .079 35.400 .000 .623
Age 65 or older -1.83 .127 206.507 .000 .160
Black, non-Hispanic -.529 .111 22.831 .000 .589
Hispanic -.499 .099 25.431 .000 .607
Other -.596 .225 7.013 .008 .551
Health insurance status
Uninsured -.611 .096 40.900 .000 .543
Note. Model [chi square] (9, N = 4,506) = 361.12,p =.000.
-2LL = 5003.33. C = 7.36, p = .392.
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Shari P. Willis
California State University-Fresno
Ellen S. Fabian
University of Maryland at College Park
Gerry E. Hendershot
University of Maryland at College Park
Ellen S. Fabian, 3214 Benjamin Building, University of Maryland College Park, MD 20742. Email: Ef24@umail.umd.edu
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