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The Patient Self-AdvocacyScale: Measuring PatientInvolvement in Health CareDecision-Making InteractionsDale E. Brashers, Stephen M. Haas & Judith L. Neidig
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To cite this article: Dale E. Brashers, Stephen M. Haas & Judith L. Neidig (1999): ThePatient Self-Advocacy Scale: Measuring Patient Involvement in Health Care Decision-Making Interactions, Health Communication, 11:2, 97-121
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HEALTH COMMUNICATION. 11(2), 97-12 1 Copyright 0 1999, Lawrence Erlbaum Associates, Inc.
The Patient Self-Advocacy Scale: Measuring Patient Involvement in Health
Care Decision-Making Interactions Dale E. Brashers
Department of Speech Communication University of Illinois-Urbana/Champaign
Stephen M. Haas Department of Communication
Rutgers University
Judith L. Neidig AIDS Clinical Trials Unit, Division of Infectious Disease
The Ohio State University College of Medicine
Despite the fact that many individuals express a desire for more information and in- volvement in the health care process, it remains to be seen if they have adopted a more participative approach by becoming involved in decisions made about their health. Research indicates that, in actual practice, individuals are differentially willing or able to be active patients. AIDS patient activists are 1 group of individuals who have become more involved in their health care decision making. This study tests the reli- ability and validity of a measure of patient activism-the Patient Self-Advocacy Scale (PSAS)--designed to assess the dimensions of (a) increased illness and treat- ment education, (b) increased assertiveness in health care interactions, and (c) in- creased potential for nonadherence. Tests administered to 2 samples of participants (174 adults from an HIV-AIDS population and 21 8 adults from ageneral population) demonstrated that the PSAS was a reliable and valid measure of patient involvement in health care decision making.
Physician-patient interactions typically are characterized as asymmetric encoun- ters in which the physician has power and control over the patient (Guttman, 1993; Hardesty, 1988; Treichler, Frankel, Kramerae, Zoppi, & Beckman, 1984; Turner, 1987). Several scholars have proposed a change in how physicians and patients should approach their interactions. Ballard-Reisch (1990) introduced a model of physician-patient interaction that stresses patient participation in the deci-
Requests for reprints should be sent to Dale E. Brashers, Department of Speech Communication, 244 Lincoln Hall, University of Illinois, 702 South Wright Street, Urbana, IL 61801. E-mail: [email protected]
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98 BRASHERS, HAAS, NEIDIG
sion-making process. In her model, physicians and patients share responsibilities for decisions at the various stages of the interview (i.e., the diagnostic phase, the explo- ration of treatment alternatives phase, and the treatment decision, implementation, and evaluation phase). According to Ballard-Reisch, open communication allows for the negotiation of roles and outcomes in each of the phases. Beisecker and Beisecker (1993) observed a shift by patients from a paternalistic metaphor to a consumeristic metaphor in approaching physician-patient interactions. They sug- gested that individuals using a consumerist approach desire more information from their physicians. Patients who acquire more information are more able to contribute to the decision-making process. Similarly, Emanuel and Emanuel(1992) compared paternalistic, interpretive, informative, and deliberative models of physician-pa- tient relationships. They described the deliberative model, in which "the aim of the physician-patient interaction is to help the patient determine and choose the best health-related values that can be realized in the clinical situation," (p. 2222) as the preferred model, because, among other reasons, it "embodies our ideal of [patient] autonomy" (p. 2225). Ratzan (1993) encouraged negotiation in physician-patient interactions through his communication, options, alternatives, standards, and trust (COAST) model. He argued that, through communicating to build trust, physi- cian-patient encounterscan lead to outcomes in which both sides achieve their goals (a win-win outcome).
Each of these new approaches recommends a participative orientation in which the physician and patient are seen as partners in decisions made about the patient's healthcare, as opposed to traditional paternalistic approaches in which the physician determines what is in the patient's best interest. In these participative models, physi- cian-patient encounters are seen as collaborative interactions in which physicians and patients respect the resources each brings to the encounter as tools needed to de- termine the most appropriate treatment regimen for that patient (Frederikson, 1993). Each model suggests a style of interaction that is seen as beneficial because it leads to greater trust in the physician (Ratzan, 1993), which might lead to "higher quality de- cisions, greater commitment to decisions, increased satisfaction with interaction, andincreasedcompliancewithtreatment regimens"(Bal1ard-Reisch, 1990, p. 94).
However, it is unclear if current practices follow these recommendations. De- spite the fact that patients continually express a desire for more information and in- volvement in the health care process (Beisecker & Beisecker, 1990; T. L. Thompson, 1994; Waitzkin, 1985), it remains to be seen if patients have adopted a more participative approach by becoming involved in decisions made about their health. Research indicates that in actual practice patients are differentially willing (Beisecker & Beisecker, 1990; Hinckley, Craig, & Anderson, 1989) or able (Bart- lett, 1993; Jackson, 1992) to be active in health care decision making. Addi- tionally, physicians may discourage rather than encourage active participation by patients (Brody, 1980; Cerling, 1989; Kassirer, 1983). perhaps because they feel threatened by patients who attempt to exert their autonomy.
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PATIENT SELF-ADVOCACY SCALE 99
The purpose of this study is to describe the development and testing of an in- strument designed to measure patient involvement in health care decision making, defined here as patient self-advocacy. To begin, we offer a rationale for the mea- surement instrument-the Patient Self-Advocacy Scale (PSAS)-based on an analysis of the three dimensions described by Brashers and Klingle (1992). Sec- ond, we describe a study designed to assess the reliability and validity of the PSAS. Finally, we report and discuss the implications of results of this study.
PATIENT SELF-ADVOCACY
Chronic or life-threatening illnesses can generate a "self-help" response (Braden, 1990, 1991b) in which patients become more likely to be "activists" (i.e., active agents; Thoits, 1994) in managing the stress related to their illness. Despite recom- mendations that patients should be more involved in interactions with their physi- cians and more responsible for decisions made about their health, little research has been conducted to determine the extent of the adoption of these prescriptions. To facilitate research in this area, a measurement instrument was developed that ac- counts for three dimensions of patient self-advocacy described by Brashers and Klingle (1992).
Brashers and Klingle (1992) conducted a study that suggested that patients can adopt a more participative stance in health care interactions. In their investigation of AIDS activists, they argued that one consequence of belonging to an activist organi- zation was a change in physician-patient interactions. Brashers and Klingle main- tained that activists tended to be more involved in decisions about their health care. This involvement manifested itself as patient self-advocacy. Self-advocacy behav- iors are used to represent one's own interests within a decision-making process. Brashers and Klingle collected data in three ways. First, over a period of 4 months, Brashers engaged in participant observation of regular business meetings, special meetings of the education committee, and demonstrations of an AIDS Coalition to Unleash Power (ACT UP) chapter in the central United States. Major issues (e.g., discriminatory immigration practices, lack of widely available anonymous testing, lack of HIV-prevention education in high schools) and collective strategies (e.g., demonstrating at local government offices, distributing leaflets at a meeting of high school principles, gluing posters to walls in the area of town where most of the gay bars were located) were observed during that time. Second, informational and edu- cational documents were collected from ACTUP chapters in the United States (New York, Los Angeles, Philadelphia, Minneapolis, Oklahoma City, and San Francisco) and Europe (London, Paris, Moscow, and Berlin). The documents included new member information packets, leaflets and fliers from many different demonstra- tions, educational materials for activists, newsletters, and press releases. Through a combination of participant observation and textual analysis, the authors independ- ently extracted themes related to activist approaches to health care communication.
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100 BRASHERS, HAAS, NEIDIG
Finally,chaptermembers wereinterviewed toclarify and validate the themes. These interviews were mainly open-ended and were used for clarification and to seek face validity of initial themes derived through participant observation and textual analy- sis. In general, the interviews focused on the salience or importance of various issues addressed by the ACT UP chapter and individual perceptions of the relative success and nonsuccess of various strategies for preparing for social confrontation, such as educating oneself about health care issues and technical information prior to engag- ing indebates withscientistsorencouragingassertive stylesof interaction. From this theme analysis, initial scale items were developed representing three dimensions of patient self-advocacy: (a) increased illness education, (b) increased assertiveness, and (c) potential for mindful nonadherence. Initial scale items were pilot tested in a small sample of 30 persons with HIV-AIDS, and several items were discarded for lack of internal consistency. Each of the dimensions and related scale items are dis- cussed in the following sections.
Increased Illness Education
As one prerequisite to a participative exchange in a medical consultation, the pa- tient must have an adequate level of pertinent medical knowledge. According to Mahler and Kulik (1991), "patients may desire 'information involvement' by learning about diagnoses, prognoses, treatment plans, prescribed medications, and so forth" (pp. 399). Information seeking has been linked to avariety of self-care be- haviors (Lovejoy, Moran, & Paul, 1988; Lovejoy, Morgenroth, Paul, Freeman, & Christianson, 1992; Lovejoy, Paul, Freeman, & Christianson, 1991) and is key to decision making. Patients typically possess a high desire for medical information concerning their treatments (Beisecker & Beisecker, 1990; S. C. Thompson, Nanni, & Schwankovsky, 1990; T. L. Thompson, 1994; Waitzkin, 1985: Weiss, 1986) but often perceive they have inadequate information (e.g., Haas & Puretz, 1992) with which to make decisions. In physician-patient interactions where pa- tients possess the necessary information, "treatment options can be generated by ei- ther party, with patients expressing a desire for certain drugs or procedures and doc- tors making their own recommendations" (Frederikson, 1993, p. 230).
Although it may seem that all patients are likely to seek information about illness and treatments, particularly in life-threatening situations, this may not be so. Pa- tients may avoid information when it is distressing (Brashers, 1995). For example, newly diagnosed, asymptomatic HIV-positive individuals sometimes avoid support groups with more advanced AIDS-diagnosed individuals, because they do not want to see or hear about what the future possibly holds for them. Studies of cancer pa- tients have shown that they are likely to delay seeking information about the causes of their cancers for more than 6 weeks after diagnosis (Lauver, Barsevick, & Rubin, 1990), perhaps as part of a denial process. Additionally, some patients may defer to authority or expertise and feel that they lack the necessary skills tocollect or compre-
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PATIENT SELF-ADVOCACY SCALE 101
hend medical information. Borgers et al. (1 993) found that patients failed to seek in- formation in medical interviews due to the related problems of nervousness, seriousness of the subject, and lack of medical knowledge. Finally, some patients may not develop a value for information seeking as a way of helping to manage their own care.
To some, viewing the physician-patient relationship as one of mutual informa- tion processing and mutual information exchange can be a means for initiating a more successful dialogue (Frederikson, 1993). Thus, one dimension of patient self-advocacy is a belief in the benefits of acquiring information and a propensity to self-educate. The items written to evaluate this dimension are given as Items I through 4 in Table 1.
When patients acquiremedical information, they gain powerwith which to assert themselves in medical situations. Increased information provides a basis from which patients can challenge the expertise or authority of the physician. This idea is explored in more depth in the following section.
Increased Assertiveness
According to Brashers and Klingle (1992), AIDS activist patients possess an in- creased desire for autonomy in their physician-patient interactions. This desire for "psychological autonomy" (Sutherland, Llewellyn-Thomas, Lockwood, Trichler,
TABLE 1 Patient Self-Advocacy Scale Items
Item Number Dimension
I I believe it is important forpeople [people with HIV or AIDS] to learn as much as they can about their illnesses and treatments. I actively seek out information on my illnesses. I am more educated about my health than most US citizens. I have full knowledge of the health problems of people like myself [people with HIV or AIDS].
5 I don't get what I need from my physician because I am not assertive enough.' I am more assertive about my health care needs than most U.S. citizens. I frequently make suggestions to my physician about my health care needs. If my physician prescribes something I don't understand or agree with, I question it.
9 Sometin~es there are good reasons not to follow the advice of a physician. 10 Sometimes I think I have a better grasp of what I need medically than rny
doctor does. I I If I am given a treatment by my physician that I don't agree with, 1 am likely to
not take it. 12 I don't always do what my physician or health care worker has asked me to do.
^Reversed scored.
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&Till, 1989) manifests itself as an increased willingness to challenge authority, to ask questions of the physician, and to engage in more decision-making regarding the course of treatment. Questions can be regarded in physician-patient interac- tions as requests for information or as challenges to the hegemony of the physician. In many physician-patient communication studies, the amount of patient question asking has been considered an indication of assertiveness (Cegala, Socha McGee, & McNeilis, 1996; Greenfield, Kaplan, &Ware, 1985; McGee, 1996; Robinson & Whitfield, 1985; Roter& Frankel, 1992; Street, 1992; S. C. Thompson et al., 1990). In fact, several of these studies have attempted to provide patient training to in- crease patient question asking during the medical interview.
Despite the fact that patients consistently report a desire for more information re- garding their health care from physicians, research has shown that most patients are hesitant to engage in question asking. Physicians have been found to initiate 9 1 % of question asking in medical interviews (Roter & Frankel, 1992), andeven with train- ing patients ask relatively few questions and offer few opinions (Cegala et al., 1996; McGee, 1996; S. C. Thompson et al., 1990). Robinson and Whitfield (1985) found that in actual medical interviews patients "loathe to ask questions because they are afraid of wasting the doctor's time, because they think it is inappropriate for them to do so, or because they do notwish tochallenge thedoctor's authority" (p. 916). Also, if patients feel rushed or feel the doctor is in a huny, they fail to initiate questions (Carter, Inui, Kukull, & Haigh, 1982; Klingle, 1993). On the part of the physician, when adequate time is not perceived as available, patient questions are often avoided, given vague responses, or even ignored, all as a means of retaining rela- tional control over the structure of the interview (Beisecker, 1990). Physicians also may interpret requests for information as a product of hysteria rather than as a bid to participate in the decision-making interaction (Geist & Hardesty, 1990).
Waitzkin (1985) hypothesized that controlling the flow of information is one strategy physicians may use to ensure their level of control over the physician-pa- tient interview. The traditional imbalance of power has affected patients' willing- ness to inquire about information regarding their own health status and care. Patients asserting their own control over the interaction may engage in increas- ingly assertive behaviors, including question asking to gain information and to challenge the expertise of the physician. The questions designed to measure the as- sertiveness dimension of the PSAS are given in Table 1 (Items 5-8).
Potential for Mindful Nonadherence
A third dimension of patient self-advocacy is a tendency to reject treatments or a willingness to be nonadherent when treatments fail to meet the expectations of the patient. Physicians have long been concerned with gaining full adherence to medi- cal regimens, so that the best recovery results may be obtained (Heszen-Klemens & Lapinska, 1984). Physicians even resort to coercive or threatening tactics to ensure
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sonal health decision-making that physicians may perceive as nonadherence. How- ever, it is possible that nonadherence to a physician-recommended treatment regi- men may be the result of carefully thought out (mindful) decisions based in both medical information and personal values and beliefs of patients. AIDS activists are proposed as an example of patients who desire a high level of personal health care in- volvement. In the following sections, a study is reported that was designed to assess the reliability and validity of the PSAS.
METHOD
Data collected for this study are part of a larger investigation of patient communica- tion behaviors. Participants werecollectedinto two distinct samples and were asked to complete a questionnaire containing Likert items and open-ended questions. Sample characteristics and variables of interest in this study are reported here.
Participants
Participants were solicited from HIV-AIDS organizations and from the general population. Sample characteristics are given in the following. General characteris- tics (e.g., age, sex) are given to provide the reader with information about the overall composition of the samples. Some characteristics arereported for the sample of indi- viduals with HIV-AIDS, because they provide information typically reported for samples within this population (e.g., sexual orientation). Other characteristics are used to examine the relation between the variables and patient self-advocacy (e.g., education level, time since diagnosis, health status, membership in an activist orga- nization, employment status), because these variables may be associated with self-advocacy .
Sample 1. This sample of 174 participants was obtained from two AIDS ser- vice organizations (n = 33), 10 AIDS activist organizations from throughout the United States (n = 31), and an AIDS clinical trials unit at alargeMidwestern teaching hospital (n = 1 10). Participants selected for this sample self-identified as being HIV positive (n = 79,45.4%) or as having AIDS (n =92,52.9%). The mean time sincedi- agnosis was 57months (range= 1 to 156 months, SD=40.59). CD4 +T-cell counts (a measure of the function of the immune system) ranged from O/mm3 to 1440lmm3 (M = 28 l/mm3, SD = 291).' Of this sample, 30 participants (17.2%) reported belonging to an AIDS activist organization, and 68 (39.1 %) said they considered themselves activists. Additional demographics for this sample are summarized in Table 2.
'The normal range of CD4 counts is considered to be 320/mm3 to 1900/rnrn3, with 1000/mm3consid- ered average in the general population. Depletion of CD4 + cells is one sign of disease progession in per- sons infected with HIV.
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TABLE 2 Demographics for Sample 1 and Sample 2
Sample I" Sumple 2h
Churacteristic Number % Number %
Sex Male Female
Race Caucasian African American Asian American Hispanic Native American Other
Completed education Elementary school High school 2-year college 4-year college Masters Doctoral or professional
Age (years) 18-25 26-35 36-45 46-55 5 6 4 5 66-75 76 and over
Employed Yes No
Sexual orientation
Gay Lesbian Heterosexual Bisexual
Sample 2. This convenience sample of 2 18 participants was drawn from stu- dents, faculty, and family and friends of students at one Midwestern university and one Western university. These participants served as an additional reliability and validity check for the PSAS. Additionally, this sample served as a baseline from which to compare the activist and nonactivist patients in Sample 1. Sample 2 was composed of 83 men (38.1 %) and 135 women (61.9%), ranging in age from 18 to
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106 BRASHERS. HAAS, NEIDIG
over 76 years. Of this sample, 169 participants (77.5%) reported having seen a phy- sician in the past 6 months, and44 (20.2%) said they had not seen a physician in that period. Demographics for this sample are summarized in Table 2.
Combined sample. The samples were combined in several of the analyses to examine the generality of conclusions and as a basis for comparing across sam- ples. Instances where Sample 1 and Sample 2 are taken as if from one population are referred to as a combined sample.
PSAS
The PSAS is composed of 12 items answered in a 5-point Likert format, ranging from 1 (strongly agree) to 5 (strongly disagree). The questions were ordered ran- domly through an 89-item questionnaire.
Related Measures
To test the convergent validity of the PSAS, several other measures were used to evaluate its consistency with related constructs. These measures are described as follows.
Desire for Control Scale. This 20-item scale measures desire for control in decision making, leadership, and general contexts (Burger, 1992). Reliabilities for the scale in past investigations have ranged from .77 (Reed, 1989) to .81 (Smith, Wallston, Wallston, Forsberg, & King, 1984). For this study, Cronbach's alpha was .74 for Sample 1 and .75 for Sample 2.
Health Opinion Survey Instrument (HOSI). This instrument measures the dimensions of preference for behavioral involvement (five items) and prefer- ence for information seeking (four items). Past investigations have reported Kuder-Richardson reliability measures of .74 and .76 (Krantz, Baum, & Wideman, 1980). For Sample 1, Cronbach's alpha was .63 for behavioral involvement, .66 for information seeking, and .67 overall. For Sample 2, Cronbach's alpha was .56 for behavioral involvement, .65 for information seeking, and .58 overall.
Desire for Autonomy Scale. This scale (used only for Sample 1) measures patients' desire for autonomy in decision making (eight items) and information seeking (eight items). Ende, Kazis, Ash, and Moskowitz (1989) reported a Cronbach's alpha reliability measure of .82 for each scale. In this study, reliability for the desire for autonomy in decision making scale was .83 and reliability for the desire for autonomy in information seeking was .75. Overall reliability for the scale was .78.
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PATIENT SELF-ADVOCACY SCALE 107
Health Locus of Control Scale. This scale (again, used only for Sample I ) was adapted from the "Disease-Specific Health Locus of Control Scale" (Dahnke, Garlick, & Kazoleas, 1994). This scale measures internal (seven items), external (five items), or chance (five items) orientation toward health locus of control. Dahnke et al. (1994) reported reliabilities of (a) 20, .72, and .72 for the internal, ex- ternal, and chance scales, respectively, for a cancer population, and (b) .80, .78, and .78 for the internal, external, and chance scales, respectively, for an anemiapopula- tion. Scale reliabilities for for the HIV-AIDS sample in this study were .73, .64, and .72 for the internal, external, and chance scales, respectively.
RESULTS
Reliability
Reliabilities for the scales were calculated using Cronbach's alpha for each sample and across samples for the PSAS. Reliabilities were calculated for the original di- mensions. These reliabilities are reported in Table 3. Correlations between the three dimensions of the PSAS also are reported in Table 3.
Factor Analyses
Table 4 reports the principal components factor analyses (with oblimin rotation) of the PSAS for Sample 1.2 Oblique rotation was chosen because we had theoretical reasons to believe that the dimensions were correlated. Factor loadings over .40 were considered large enough to have loaded on a particular factor, and loadings of .SO and over were considered practically significant (Hair, Anderson, Tatham, & Black, 1995). The factor analyses showed aconsistent pattern forthe Nonadherencedimen- sion of patient self-advocacy. The factor structure mixed the dimensions of Educa- tion and Assertiveness as was reflected in the significant correlation between the two original dimensions. The collapsed Education-Assertiveness dimension of the PSAS hadareliability of .76forSample 1, .78 for Sample 2, and .79 forthecombined samples.
Discriminating among groups. Criterion validity measures the association between the predictor and a criterion. Concurrent criterion validity is "assessed by correlating a measure and the criterion at the same point in time" (Carmines & Zeller, 1979, p. 18). To test the criterion validity of the scale, participants in Sample 1 were asked two questions: (a) "Do you belong to an activist organization?" and (b) "Do you consider yourself an activist?" (Participants in Sample 2 were not
2Factor analysis for the three groups (HIV, non-HIV, and combined sample) were similiar. Factor analysis for the non-HIV and combined sample are available from Dale E. Brahers.
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TABLE 3 Reliabilities and Correlations Between Dimensions of PSAS
- -
Dimenston Rellabllriy Assertrveness Nonudherence Overall Scale
Sample 1 Education Assertiveness Nonadherence Overall Scale
Sample 2 Education Assertiveness Nonadherence Overall Scale
Combined Samples Education 0.64 .65** .17** .75** Assertiveness 0.70 .25** .82** Nonadherence 0.79 .69** Overall Scale 0.78
Note. PSAS = Patient Self-Advocacy Scale. * p < .05. **p < .01.
TABLE 4 Factor Analysis (Sample 1: HIV Population)
Factor
Item I I I I11 M SD
1 -.I3 .15 - .94 4.74 0.66 2 .26 -. 15 - .6 1 4.34 0.74 3 - .66 -. 10 .20 4.14 0.99 4 - .74 .05 -.lo 3.60 1.10 5 - .61 .27 -.03 3.74 1.04 6 - .80 -.02 .02 3.96 0.91 7 - .52 -.37 .2 1 3.60 0.95 8 - .56 -.24 .01 4.20 0.75 9 -.01 -.75 .03 3.04 1.17 10 .18 -.79 -.lo 3.21 1.11 11 -.I3 a -.I0 3.02 1.03 12 -.03 a .14 2.72 1.13
Note. Percent of variance accounted for = 59.6. Overall reliability = .79. See Table 1 for description of scale items. Underlined values represent loadings on factors.
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PATIENT SELF-ADVOCACY SCALE 109
asked these two questions.) A test of the independence of the answers showed that membership in an activist organization was independent of a self-assessment as an activist, ~ 2 ( 1 , N = 170) = 28.80, p < .0001. Specifically, 26 participants answered yes to both questions, 99 participants answered no to both questions, 4 participants said they belonged to an activist organization but did not consider themselves activ- ists, and 41 participants said they did not belong to an activist organization but con- sidered themselves activists.
To test how well the self-advocacy measures discriminated between self-reported activist and nonactivist participants, groups were formed according to their responses to these questions. These participants also were compared with the general population participants in Sample 2. For each dimension of the activist scale, a multivariate analysis of variance was conducted using an independent variable with three groups (activist, nonactivist, and general sample) and three de- pendent measures (assertiveness, education, and nonadherence). Using the first question ("Do you belong to an activist organization?') to classify the groups, the multivariate test was significant, F(6, 768) = 19.70, Wilks's A = .75. Cell means, standard deviations, and univariate F tests are presented in Table 5. Planned com- parisons (reported in Table 6) showed that the mean of the activist group was dif- ferent from the mean of the nonactivist group, and that the mean of the activist group was different from the mean of the general sample (Sample 2) for all three dimensions of the PSAS. However, the means for the nonactivist group and the general sample were different for the education and assertiveness measures but not
TABLE 5 Means, Standard Deviations, and Univariate FTests for PSAS Dimensions Differentiating
Activist, Nonactivist, and General Population Groups
Sample I
Do You Belong to an Activist Organization ? Sample 2
General Yesa Nob Samplec
Dimension M SD M SD M SD F q2 - - -
Assertiveness 4.27 .76 3.85 .6S 3.48 .66 26.5* .I2 Education 4.60 .40 4.17 .60 3.81 .54 36.9* .16 Nonadherence 3.85 .81 2.91 .83 3.12 .81 19.3* .09 OverallPSAS 4.24 .48 3.64 .51 3.48 .48 32.07* .14
Note. PSAS = Patient Self-Advocacy Scale " n = 3 0 . h n = 141.Cn=218. *p < ,001.
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TABLE 6 Planned Comparisons Differentiating Means of Activist,
Nonactivist, and General Population Groups
Do You Belong to an Activist Organizution ? Sample 2
General Dimension Yesd Noh Samplec I
Assertiveness 1 0 - 1 6.13** Assertiveness 1 -1 0 3.16* Assertiveness 0 1 - 1 5.17** Education 1 0 - I 7.30** Education 1 - 1 0 3.85** Education 0 1 - 1 6.00** Nonadherence 1 0 - 1 4.57** Nonadherence I -1 0 6.10** Nonadherence 0 1 - 1 -3.11* Overall PSAS I 0 - I 7.91** Overall PSAS I - I 0 6.08** Overall PSAS 0 1 - 1 2.93*
Note. PSAS = Patient Self-Advocacy Scale. All possible comparisons among the three groups (activist, nonactivist, and general sample) were conducted for each dimension and the overall scale.
' t 1 = 3 0 . ~ n = 141.cn=218. * p < .05. **p < ,001.
for the nonadherence measures. Planned comparisons for the overall PSAS showed that the three groups (activists, nonactivists, and general population) were all different from one another.
For the classification based on the second question ("Do you consider yourself an activist?')), the multivariate test was also significant, F(6,768) = 16.73, Wilks's A = .78. Cell means, standard deviations, and univariate F tests are presented in Table 7. In all cases, there were significant differences among the means. Likewise, in all cases, the mean of the activist group was higher than the mean for the nonactivist group, indicating higher assertiveness, belief in education, and potential for nonadherence. Planned comparisons revealed similar patterns for these data as for those reported in Table 6, particularly that activists were different from nonactivists and members of the general sample for most measures (see Table 8). However, the mean for nonactivists was lower than the mean for members of the general sample on the nonadherence dimension and the activist and general samples were not different from one another. Planned comparisons for the overall PSAS showed that the activ- ists were different from nonactivists and the general population, but nonactivists and the general population were not different from one another.
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TABLE 7 Means, Standard Deviations, and Univariate FTests for PSAS Dimensions Differentiating
Activist, Nonactivist, and General Population Groups
Sample I
Do You Consider Yourselfan Activist? Sumple 2
General Yes" Nob Samplec
Dimension M SD M SD M SD F q2
Assertiveness 4.17 .69 3.77 .64 3.48 .66 29.4** .13 Education 4.50 .SO 4.08 5 9 3.82 .54 42.2** .18 Nonadherence 3.30 .88 2.93 .90 3.16 .73 4.79* .02 Overall PSAS 3.98 .55 3.59 .SO 3.48 .48 26.37** .12
Note. PSAS = Patient Self-Advocacy Scale. VI = 68. hn = 103. 'n = 218. * p < .05. **p < ,001.
TABLE 8 Planned Comparisons Differentiating Means of Activist,
Nonactivist, and General Population Groups
Sample I
Do You Consider Yourself an Activist? Sample 2
Dimension Yes" Noh General Sample' I
Assertiveness 1 0 1 7.49** Assertiveness 1 -I 0 3.83** Assertiveness 0 1 -1 3.69** Education 1 0 - I 9.03** Education 1 -1 0 4.90** Education 0 I - 1 4.09** Nonadherence 1 0 -1 1.21 ns Nonadherence I - 1 0 2.92* Nonadherence 0 1 -1 -2.40* Overall PSAS 1 0 - I 7.26** Overall PSAS 1 - I 0 5.06** Overall PSAS 0 I - I 1.81 ns
Note. PSAS = Patient Self-Advocacy Scale. All possible comparisons among the three groups (activist, nonactivist, and general sample) were conducted for each dimension and the overall scale.
VI = 68. hn = 103.91 = 218. * p < .0S. **p < ,001. ns = nonsignificant.
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1 12 BRASHERS, HAAS, NEIDIG
Associations with related measures. Construct validity assesses the "ex- tent to which a particular measure relates to other measures consistent with theoretically derived hypotheses concerning the concepts (or constructs) that are being measured" (Carmines & Zeller, 1979, p. 23). To test construct validity, corre- lations of the PSAS with several other measures that theoretically were thought to be related to patient activism were examined. Participants in Sample 1 were asked to fill out the Desire for Control and HOSI (behavioral involvement and informa- tion seeking) instruments. In addition, they were asked to complete the Desire for Autonomy (decision making and information seeking) and Health Locus of Con- trol (internal, external, and chance) Scales. As shown in Table9, the PSAS was cor- related with both dimensions of the Desire for Autonomy Scale. In addition, the PSAS was correlated negatively with the External Locus of Control but was not correlated with the Internal Locus of Control or Chance Locus of Control Scales. The PSAS was correlated with formal education level and with time since diagnosis
TABLE 9 Patient Self-Advocacy Scale Correlations with Other Measures
Scule or Measure Scale Reliubiliv Correfution
Sample I : HIVtAIDS sample Desire for Control .74 .26** Desire for Autonomy .78 .6S**
Decision making .83 .61** Information seeking .75 .29**
Health Locus of Control Internal .73 .02 External .64 -.46** Chance .72 .00
Health Opinion Survey .67 .63** Behavioral involvement .63 .57** Information seeking .66 .44**
Demographics
Age -.03 Education .33** Number of times hospitalized .07 Time since diagnosis .- 72**
Sample 2: general population Desire for Control Health Opinion Survey
Behavioral involvement Information seeking
Demographics
Age Education
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PATIENT SELF-ADVOCACY SCALE 1 13
but not with participant's age or number of times hospitalized. Finally, unemployed individuals (M = 3.88, SD = 0.56) averaged higher scores on the PSAS than individ- uals who were employed (M = 3.63, SD = 0.55), F(1, 164) = 8.32, p < .0l .
Participants in Sample 2 were asked to complete the Desire for Control and HOSI. As shown in Table 9, each test was correlated with the PSAS. Additionally, the PSAS was correlated with the education level of the participant but was not correlated with age.
GENERAL DISCUSSION
The purpose of this study was to investigate the reliability, validity, and potential use of the PSAS. Three conclusions seem warranted given the results of this inves- tigation. First, the PSAS appears to be a reliable and valid means for measuring pa- tient involvement in health care decision making. Second, measuring patient self-advocacy is important because it may be associated with increased health care participation and increased likelihood of nonadherence. Third, future research needs to focus on the relation of activism to other interactional behaviors. These conclusions are elaborated in the following sections.
Reliability and Validity
The PSAS appears to be a reliable and valid means of measuring patient self-advocacy. Internal consistency of the scales was acceptable for the overall scales and for the nonadherence dimension but was slightly low for the assertive- ness and education dimensions of the PSAS. Reliabilities for several scales were low (e.g., the HOSI), perhaps an artifact of the length of the questionnaire (89 items plus several open-ended questions). The reliability of the education and assertive- ness dimensions was improved by collapsing them. The move to combine these di- mensions could be justified for two reasons: (a) empirically, education and asser- tiveness were correlated in both samples, and (b) conceptually, we would expect that increased education about illness and treatments would facilitate assertiveness in medical interactions and that assertiveness would lead to greater information ac- quisition. That is, we would expect a reciprocal relation between the two variables. However, we do still believe that the constructs can be meaningful as separate enti- ties: people can educate themselves but still fail to be assertive and vice versa.
Validity of the scale was assessed using both criterion and construct measures. Using the criterion measure of self-reported membership in an activist organiza- tion, scores on the PSAS and its dimensions were different for activists and nonactivists. Using the criterion measure of perceiving oneself as an activist, most scores on the PSAS and subscales were different for activists and nonactivists, al- though actual membership in an activist organization was a slightly better predic- tor than considering oneself an activist. Perhaps this is because membership in an
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1 14 BRASHERS, HAAS, NEIDIG
activist organization provides individuals with more training in self-advocacy be- haviors. Thus, in general, patients who belong to activist organizations or who be- lieve themselves to be activists report that they are more assertive, place more importance on illness and treatment education and information, and have a greater potential for nonadherence than those patients who do not belong to an activist or- ganization or who do not believe themselves to be activists. The scale and subscale scores also were different for activists and members of Sample 2 (the general pop- ulation) for both criterion measures. In addition, the scores on the overall scale and the Assertiveness and Education subscales were different for nonactivist patients and members of the general sample. However, the scores on the nonadherence di- mension were higher for the general sample than the nonactivist HIV sample. In other words, general population members reported themselves to be more likely to engage in nonadherence than nonactivist HIV-AIDS patients. This finding re- flects a hesitancy in nonactivist HIV-AIDS patients to challenge the recommenda- tions of their physician, which may be due to the threat they feel from their disease. Overall, the patient activism scale and its subscales successfully discriminated be- tween persons who reported themselves to be activists and those who did not.
Additionally, construct validity was assessed through correlations with other closely related measures. As would be expected theoretically, patient self-advocacy was correlated positively with (a) Desire for Control (i.e., patients who want a high degree of control in their lives are more likely to be patient activists); (b) Desire for Autonomy (i.e., patients who want autonomy in decision making and information seeking in health care interactions are more likely to be patient activists); and (c) the HOSI (i.e., patients who have a preference for involvement and preference for infor- mation are more likely to be activists). The negative correlation between patient ac- tivism and external locus of control was also as expected. Individuals who believe that things that happen to them areout of their control are less likely to believe in the efficacy of being informed and assertive. However, a surprising result was that inter- nal locus of control and chance locus of control were not associated with self-advocacy. Perhaps some people have beliefs that support an internal locus of control but do not have (or do not believe themselves to have) the skills and abilities needed to be more involved in health care decision making, perhaps due to the tech- nical issues involved. This might prevent patients who otherwise would be activists from believing they could engage in successful strategies for gaining control in their interactions with physicians. Ultimately, they may feel treatment implementations are still at the discretion of the physician. If this is true, patients who have an internal locus of control but fail to take charge of their health care may experience greater frustration and more psychosocial distress than patients who have an internal locus of control but have found the means to be more active. Finally, several demographic characteristics of the sample were related to patient self-advocacy. As might be ex- pected, the education level demographic variable (e.g., having completed high school vs. having completed acollegedegree) was correlated withself-advocacy for
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PATIENT SELF-ADVOCACY SCALE 1 15
both samples. Patients who are more educated may find information easier to access and to comprehend (Mishel, 1988) and may have greater resources with which to as- sert themselves. Length of time since diagnosis was also associated with patient self-advocacy. When individuals are infected with HIV, they can be asymptomatic formany years before they arediagnosed with AIDS (asmarked by alow CD4count, the presence of at least one opportunistic infection, or both; see Brashers, Neidig, Reynolds, & Haas, 1998). Perhaps individuals are more likely to be activists once their health begins to decline. The final demographic variable associated with self-advocacy was employment status. Somewhat unexpectedly, unemployed indi- viduals had higher scores on the PSAS (as well for the three subscale scores) than did employed individuals. Unemployed individuals might have more time to devote to educating themselves. In our own clinical and research experience, we have found that often unemployed individuals (e.g., those on disability) consider managing their health care to be their "full-timejob." It also may be that unemployed individu- als have developed a need to self-advocate because of a need to negotiate a complex system of care (e.g., acquiring disability payment). In a study of individuals with rheumatoid arthritis and other arthritis-related conditions, Braden (1991a) noted that "the ability to perservere through the process of gaining approval for a disability claim may be reflected in the continuing strength of enabling skill" (p. 275).
Using The PSAS
The PSAS was developed from an examination of AIDS activist behaviors (Brashers & Klingle, 1992). AIDS activists are a unique population, because they were one of the first patient groups organized around the values of confronting au- thority, challenging expertise, and engaging in civil disobedience (Brashers & Jack- son, 199 1 ; Fab & Sobnosky, 1993). These underlying principles are demonstrated in their interactions with physicians and other health care providers. Through a com- mitment to gathering medical information, activists appear to be pursuing the participative model of the physician-patient interview recommended by research- ers identified in the introduction. AIDS patient activists attempt to educate them- selves about their disease and possible treatments in an attempt to engage in a type of mutual decision-making discussion with their physicians. Additionally, through as- sociations with activist organizations, AIDS activists are encouraged to be confron- tational when advocating for themselves, which can lead to more assertive behavior in their interactions with health care providers. Finally, if AIDS activists believe that a treatment is not beneficial to them, they are likely to reject the treatment. Thus, pa- tient involvement that reflects patient activism is an extreme form of interactional behavior that may manifest itself only in relatively special circumstances.
Measuring patient self-advocacy as a component of health care activism can be an important move toward understanding the evolution of patient communicative behaviors as encouragement for involvement increases and spreads beyond AIDS
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1 16 BRASHERS, HAAS, NEIDIG
activists. Brashers and Jackson (1991) noted that breast cancer groups (e.g., the Breast Cancer Coalition) have begun to emulate AIDS activist groups to secure more funding and awareness for breast cancer research. Whether or not breast can- cer activists develop parallel behaviors at the level of physician-patient interac- tions remains to be seen.
Moreover, as information-acquisition capabilities change, patient activism may increase. In recent years, people are gaining easier access to medical information (Harris & Hamburg, 1990). In fact, new technologies such as "electronic bulletin boards for computer access by persons with medical questions, educational soft- ware on medical topics, the availability of home medical tests, and an increase in medicine practiced via telephone and television" (Beisecker & Beisecker, 1993, p. 50) are aiding patients in obtaining medical information. Patients share the infor- mation they acquire through bulletin boards (e.g., the HIGHnet project; see Scheerhorn, Warisee, & McNeilis, 1995), internet newsgroups (e.g., sci.med.aids or misc.health.aids), and mailing lists (e.g., [email protected]). As patients continue to increase their level of medical information, more active mod- els of participative patient-physician interaction become possible, and perhaps in- creasingly likely.
Although some speculate that increased hformation may lead to increased treatment adherence (Eraker et al., 1984), it also may lead to reasoned rejection of a physician's prescriptions. Although medical workers have been primarily con- cerned with achieving full patient compliance with treatment recommendations, it is possible that patients who challenge or reject treatments may be reaching rea- soned conclusions based on information about potential risk, possible alternatives, personal values, and standards for quality of life. Measuring patient activism can be an important move toward understanding the evolution of patient behaviors as encouragement for involvement increases.
The PSAS is intended for use as a unidimensional scale to assess personal self-advocacy in persons with HIV-AIDS. Subscale scores for the three dimen- sions, however, can be derived and may provide insight into an individual's pro- pensity toward increased education, assertiveness, or potential for mindful nonadherence, respectively.
FUTURE RESEARCH
Future studies of activism should be focused in several areas. First, longitudinal studies may provide information about developing and sustaining activist commu- nicative behaviors. Over the short run, individuals should have fairly sustained val- ues that lead to activism (and therefore test-retest reliability should be high). How- ever, it may be that tendency toward patient activism changes over the span of chronic or life-threatening illnesses. For example, when individuals are infected with HIV, they can be asymptomatic for many years before they are diagnosed with
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AIDS (marked by a low helper T-cell count, the presence of at least one opportunis- tic infection, or both). Perhaps individuals are morelikely to adopt an activist orien- tation when their health begins to decline.
Additionally, researchers should investigate the reasons that some individuals choose to become involved in health care decision making when others do not. Some patients who encounter health care workers for more mundane reasons (e.g., for routine examinations or for minor illnesses) may have belief systems that sup- port patient activist values but may not be motivated to act on those values unless they find themselves in a life-threatening or chronic illness situation. Therefore, the motivation and the ability to be an activist may be a necessary impetus for most patients to become more involved in health care decision making. Additionally, activists may be different from nonactivists in terms of coping behaviors, willing- ness to communicate with physicians and other health care workers, and avoidance of health care situations, among other variables.
Finally, studies should be conducted that more directly assess the impact of ac- tivism on physician-patient interactions. Past research indicates that physicians do not always respond positively to more assertive patients and may reject patient bids for collaboration in decision making. Street (1991) found that patients who were more educated and assertive with their physicians were given more informa- tion and induced more partnership-building utterance, which encouraged more mutual decision making. However, in a study by Geist and Hardesty (1990), the use of assertive behavior invoked increased physician communication; however, confrontational behavior was perceived as more threatening and generally was disliked by physicians. Brashers and Klingle (1992) suggested that physician-pa- tient interactions in which patients assert themselves and physicians respond by asserting more of their own control can result in downward escalating spirals lead- ing to decreased communication and decreased satisfaction with the encounter. Future research should investigate the willingness of physicians to accept patient activism as normative behavior. Research on naturally occurring discourse be- tween physicians and patients might lead to a clearer understanding of the conver- sational strategies that the actors use to negotiate this new type of relationship.
CONCLUSION
Research on physician-patient interaction continues to indicate the need for in- creased patient involvement in their health care. Research indicates that, in actual practice, patients differentially are willing or able to be active participants. AIDS pa- tient activists are one group of patients that have become more involved in decision making. This study tests the reliability and validity of a measure of patient self-advocacy-the PSASdes igned to assess the dimensions of (a) increased ill- ness and treatment education, (b) increased assertiveness in health care interactions, and (c) increased potential for nonadherence. This instrument provides a useful ba-
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sis for assessing and predicting patient communicative behaviors. Theoretically this project facilitates the development of theories of physician-patient interactions. In turn, the theories will lead to recommendations about the potential for, and efficacy of, patient assertiveness training currently being prescribed.
ACKNOWLEDGMENTS
We gratefully acknowledge support for this research from the National Institute of Nursing Research Grant lR29NR04376, National Institute of Allergy and Infec- tious Diseases AIDS Clinical Trials Group Grant AI25924, and The Ohio State University Research Foundation.
We thank Edward Abdalla, Amy Carnicom, Carmellia Jackson, Charlotte Mills, Jane Russell, Nancy Stark, Suzanne Temple, and Kathy Watson for their help with data collection.
REFERENCES
Ballard-Reisch, D. S. (1990). A model of participative decision making for physician-patient interac- tion. Health Communication, 2, 91-104.
Bartlett, C. L. (1993). Communication disorders in adults with AIDS. In S. C. Ratzan (Ed.), AIDS: E ~ e c - rive health communication j i ~ r the 90s (pp. 189-200). Washington, DC: Taylor & Francis.
Beck, K., & Frankel. A. (198 1). A conceptualization of threat communication and protective health be- havior. Social Psychology Quarterly. 44, 204-217.
Becker, M. H., Maiman, L. A,, Kirscht, J. P., Haefner, D. P., Drachman, R. H., &Taylor, D. W. (1979). Patient perceptions and compliance: Recent studies of the health belief model. In R. B. Haynes, D. W. Taylor. & D. L. Sackett (Eds.), Compliunce in health cure (pp. 71-90). Baltimore: Johns Hopkins University Press.
Beisecker, A. E. (1990). Patient power in doctor-patient communication: What do we know? Health Communication, 2, 105- 122.
Beisecker, A. E., & Beisecker, T. D. (1990). Patient information-seeking behaviors when communicat- ing with doctors. Medical Cure, 28, 19-28.
Beisecker, A. E., & Beisecker, T. D. (1993). Using metaphors to characterize doctor-patient relation- ships: Paternalism versus consumerism. Health Communication, 5, 41-58.
Borgers, R., Mullen, P. D., Meertens, R., Rijken, M., Eussen, G., Plagge, I.. Visser, A. P.. & Blijham, G. H. (1993). The information seeking behavior of cancer outpatients: A description of the situation. Patient Education and Counseling, 22, 35-46.
Braden, C. J. (1990). Learned self-help response to chronic illness experience: A test of three alter- native learning theories. Scholarly Inquiry for Nursing Practice: An International Journal, 4, 23-40.
Braden, C. J. (1991a). Learned response to chronic illness: Disability payment recipients vs. nonrecipients. Rehabilitation Psychology, 36, 265-277.
Braden, C. J. (1991b). Patterns of change over time in learned response to chronic illness among par- ticipants in a systematic lupus erythematous self-help course. Arthritis Care and Research, 4. 158-167.
Brashers, D. E. (1995, May). Communicationand themunagementc~funcertain~: The cuse ofAIDSand HIV-infected patients. Paper presented at the annual meeting of the International Communication Association, Albuquerque, NM.
Dow
nloa
ded
by [
Uni
vers
ity o
f C
alif
orni
a Sa
n Fr
anci
sco]
at 1
4:38
15
Janu
ary
2012
PATIENT SELF-ADVOCACY SCALE 1 19
Brashers, D. E., &Jackson, S. A. (1991). "Politically savvy sickpeople:" Public penetrationofthe techni- cal sphere. In D. W. Parson (Ed.), Argument in controversy: Proceedings oj'the Seventh SCAIAFA Conference onArgunzentation (pp. 284-288). Annandale, VA: Speech Communication Association.
Brashers, D. E., & Klingle, R. S. (1992, October). The influence ufactivism on physician-patient com- municutlon. Paper presented at the annual meeting of the Speech Communication Association, Chi- cago, IL.
Brashers, D. E.. Neidig, J. L., Reynolds, N., & Haas, S. M. (1998). Uncertainty in illness across the HIVlAlDS trajectory. J(iurnu1 cfthe Associati(~t! ofNur.ses in AIDS Cure. 9, 66-77.
Brody, D. S. (1980). The patient's role in clinical decision making. Annuls (Jflnternal Medicine. 93, 7 18-722.
Burger, J. M. (1992). Desire,fi)rcontrol: Personality, social, and cliniculperspecrives. New York: Ple- num.
Carmines, E. G., & Zeller, R. A. ( 1979). Quantitative applications in the social sciences series: Vol. 17. Reliability and validity assessment. Thousand Oaks, CA: Sage.
Carter, W.. Inui, T., Kukull, W., & Haigh, V. (1982). Outcome based doctor-patient interaction analy- sis: 11. Identifying effective provider and patient behavior. Medical Cure, 20, 520-535.
Cegala, D. J., Socha McGee, D., &McNeilis, K. S. (1996). Components of patients' and doctors' percep- tions of communication competence during a primary care interview. Health Conzrnunicution, 8. 1-28.
Cerling, L. (1989). The discursive construction of the physician: The death of a dialogue. In B. E. Gronbeck (Ed.), Spheres ($argument: Proceedings of the Sixth SCALAFA Conference on Argumen- tation (pp. 94-100). Annandale, VA: Speech Communication Association.
Dahnke, G. L., Garlick, R., & Kazoleas, D. (1994). Testing a disease-specific health locus of control scale among cancer and aplastic anemia patients. Health Communrcution. 6, 37-53.
Donovan, J . L., & Blake, D. R. (1992). Patient non-compliance: Deviance or reasoned deci- sion-making? Social Science & Medicine, 34, 507-513.
Emanuel, E. J.. & Emanuel, L. L. (1992). Four models of the physician-patient relationship. Jout.nul c!f'
the American Medical Association. 267, 222 1-2226. Ende, J., Kazis, L., Ash, A., & Moskowitz, M. A. (1989). Measuring patients' desire for autonomy: De-
cision making and information-seeking preferences among medical patients. Journal of Generul In- ternal Medicine, 4 , 23-30.
Eraker, S. A., Kirscht, J. P., & Becker, M. H. (1984). Understanding and improving patient compliance. Annals ($Internal Medicine, 100, 258-268.
Fab, V., & Sobnosky, M. J. (1993). Responses from the street: ACT UP and con~munity organizing against AIDS. In S . C. Ratzan (Ed.),AIDS: Ejective health communicutionfi,rt~~e 90s (pp. 91-109). Washington, DC: Taylor & Francis.
Frederikson, L. G. (1993). Development of an integrative model for medical consultation. Health Com- munication, 5, 225-237.
Geist, P., & Hardesty, M. (1990). Reliable, silent, hysterical, or assured: Physicians assess patient cues in their decision making. Health Communication, 2, 69-90.
Gillum, R. R., & Barsky, A. J. (1974). Diagnosis and management of patient noncompliance. Journal of the Amer~can Medical Association, 228, 1563-1 567.
Greenfield, S., Kaplan, S., &Ware, J . E. (1985). Expanding patient involvement in health care: Effects on patient outcomes. Annuls of Infernal Medicine. 102, 52G528.
Guttman, N. (1993). Patient-practitioner information exchange as an asymmetrical social encounter: Do patients actually know what their practitioners think they know? In J. R. Schement & B. D. Ruben (Eds.), Between commttnicution and ittfi)rt?zation: inff~rmution and behavior (Vol. 4, pp. 293-318). New Brunswick, NJ: Transaction.
Haas, A., & Puretz, S. L. (1992). Encouraging partnerships between health care providers and women recommended for gynecological surgery. Health Communication, 4, 29-38.
Dow
nloa
ded
by [
Uni
vers
ity o
f C
alif
orni
a Sa
n Fr
anci
sco]
at 1
4:38
15
Janu
ary
2012
120 BRASHERS, HAAS, NEIDIG
Hair, J. F., Anderson, R. E., Tatham, R. L. & Black, W. C. (1995). Multivariate data analysis with read- ings (4th ed.). Englewood Cliffs, NJ: Prentice Hall.
Hardesty, M. (1988). Information tactics and the maintenance of asymmetry in physician-patient rela- tionships. In D. R. Maines & C. J. Couch (Eds.), Communication and social srructure (pp. 39-58). Springfield, IL: Thomas.
Harris, L. M., &Hamburg. M. A. (1990). Back to the future: Television and family health-care manage- ment. In J. Brandt (Ed.), Television and theAmerican,fumily (pp. 329-347). Hillsdale, NJ: Lawrence Erlbaum Associates, Inc.
Haug, M. R., & Lavin, B. (1981). Practitioner or patient-Who's in charge?Journul ($Health and So- cial Behavior, 22, 2 12-229.
Heszen-Klemens, I., & Lapinska, E. (1984). Doctor-patient interaction, patients' health behavior and effects of treatment. Social Science & Medicine, 19, 9-1 8.
Hinckley, J . J., Craig, H. K., & Anderson, L. A. (1989). Communication characteristics of provider-pa- tient information exchanges. In H. Giles & W. P. Robinson (Eds.), Handbookof language andsocial psychology (pp. 519-536). New York: Wiley.
Jackson, L. D. (1 992). Information complexity and medical communication: The effect of technical lan- guage and amount of information in a medical message. Healrh Communication, 4, 197-210.
Kassirer, J . P. (1983). Adding insult to injury: Usurping patient's prerogatives. New England h~urnal of Medicine, SOX, 898-90 1 .
Klingle, R. S. (1993). Bringing time into physician compliance-gaining research: Toward a reinforce- ment expectancy theory of strategy effectiveness. Health Communication, 5, 283-308
Korsch, B. M., & Negrete, V. F. (1972, August). Doctor-patient communication. Scientific American, 227, 66-74.
Krantz, D. S., Baum, A., & Wideman, M. V. (1980). Assessment of preferences for self-treatment and information in health care. Journal (!fPersonaliry and Social Psychology, 39, 977-990.
Langer, E., & Weinman, C. (198 1 ).When thinking disrupts intellectual performance: Mindfulness on an overlearned task. Personaliq and Social Psychology Bulletin, 9, 240-243.
Lauver, D., Barsevick, A., & Rubin. M. (1990). Spontaneous causal searching andadjustment to abnor- mal Papicalaou test results. Nursing Research, 39. 305-308.
Lovejoy, N. C., Moran, T. A., & Paul, S. (1988). Self-care behaviors and informationalneeds of seroposi- tive homosexual/bisexual men. Journal (#Acquired lrnmune Deficiency Syndromes, 1, 155-161
Lovejoy, N. C., Morgenroth, B. N., Paul, S., Freeman, E., &Christianson, B. (1992). Potential predic- tors of information seeking behavior of homosexual/bisexual (gay) men with a human immunodefi- ciency virus seropositive status. Cancer Nursing, 15, 116-124.
Lovejoy, N. C., Paul, S., Freeman, E., & Christianson, B. (1991). Potential correlates of self-care and symptom distress in homosexual/bisexual men who are HIV Seropositive. Oncology Nursing Fo- rum, 18, 1 175-1 185.
Mahler, H. L, & Kulik, J. A. (1991). Health care involvement preferences and social-emotional recovery of male coronary-artery-bypass patients. Health Psychology, 10, 399-408.
Marston, M. V. (1970). Compliance with medical regimens: A review of the literature. Nursing Re- search, 19, 312-323.
McGee. D. S. (1996). In search ofpatient communicution competence: A test oj'an inten,ention to im- prove communication in the primary-care intenview. Unpublished doctoral dissertation, Ohio State University, Columbus.
Mishel, M. H. (1988). Uncertainty in illness. Imuge: Journal ($Nursing Scholarship, 20, 225-232. Ratzan, S. C. (1993). Health communication as negotiation: The COAST model and AIDS. In S. C.
Ratzan (Ed.), AIDS: Ejfective health communicutionji>r the 90s (pp. 37-5 1). Washington, DC: Tay- lor & Francis.
Reed, T. F. (1989). Do union organizers matter? Individual differences, campaign practices, and repre- sentation election outcomes. Industrial and Lubor Relations Review. 43, 103-1 19.
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