- Email: [email protected]
AIDS
Meaning of Illness and Psychological Adjustment to HIV/AIDS EUGENE W. FARBER, PH.D., HAMID MIRSALIMI, PH.D. KAREN A. WILLIAMS, M.A., J. STEPHEN MCDANIEL, M.D.
The authors explored the relationship between meaning of illness and psychological adjustment in persons with symptomatic HIV disease and AIDS. A group of 203 participants completed selfreport questionnaires measuring meaning of illness, problem-focused coping, social support, psychological well-being, and depressed mood. Positive meaning was associated with a higher level of psychological well-being and a lower level of depressed mood. Further, meaning contributed significantly to predicting both psychological well-being and depressed mood over and above the contributions of problem-focused coping and social support. These findings have implications for HIV coping and adjustment models and for HIV-related psychotherapy. (Psychosomatics 2003; 44:485–491)
T
he significance of meaning-making in psychological health and dysfunction has long been recognized in the clinical literature,1,2 although researchers have only recently investigated meaning empirically in models of psychological adjustment to severe adverse life events.3–5 This research has shown that psychologically traumatic events, including severe or life-threatening physical illnesses, can challenge core personal assumptions and expectations regarding the self and the world. In response, one’s fundamental meaning systems may be called into question, including how one makes sense of the world and defines one’s values, commitments, and sentiments regarding what is personally significant or worthy in life.3,6,7 Finding positive meaning in the experience, including finding new perspectives and insights regarding the self and the world, may favorably affect adjustment to adversity.7 Consistent with this idea, a handful of published investigations in the literature on HIV have suggested that positive meaning may have a beneficial effect on psychological adjustment to the disease,8,9 and may even be associated with health protective effects.10 Despite such findings, meaning has received surprisingly little attention in the research literature on HIV-related adjustment. The purpose of this study, therefore, was to add to this literature Psychosomatics 44:6, November-December 2003
by investigating the relationship between meaning and patterns of psychological adjustment in individuals with symptomatic HIV disease and AIDS. The study was specifically concerned with situational meaning,11 defined as a constellation of appraisals made by an individual regarding the personal significance, implications, and consequences of a specific life circumstance. HIV-related situational meaning may include construals of the personal effect and gravity of the disease, attitudes and expectancies regarding disease-related threats and challenges, and beliefs about one’s capacities for managing HIV-associated stressors.11,12 Situational meaning as operationalized here has been distinguished conceptually from global meaning in the literature on stress and coping.4,11 Global meaning refers to fundamental personal assumptions and beliefs
Received Aug. 20, 2002; revision received Feb. 25, 2003; accepted March 17, 2003. From the Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, Atlanta; and the Department of Clinical Psychology, Argosy University, Atlanta. Address reprint requests to Dr. Farber, Grady Infectious Disease Program, 341 Ponce de Leon Ave., Atlanta, GA 30308; [email protected] (e-mail). Supported by Emory Medical Care Foundation research grant 97008. Copyright 䉷 2003 The Academy of Psychosomatic Medicine.
485
Adjustment to HIV/AIDS about the purpose, comprehensibility, coherence, and value of one’s life across a spectrum of life circumstances.1–4,11 In line with emerging research trends emphasizing identification of factors that predict positive psychological adaptation,7 a major objective of this study was to investigate meaning alongside psychosocial variables empirically known to predict favorable psychological adjustment to adversity. Two such variables, social support and problem-focused coping (e.g., problem-solving, information seeking), were selected for this purpose because their relationship to positive adjustment to illness, including HIVrelated adjustment, is empirically well-established.9,13–15 The role of emotion-focused coping was not addressed in this study because it tends to be associated with poorer adjustment outcomes.9,15 The study incorporated measures of both positive (psychological well-being) and negative (depressed mood) dimensions of psychological adjustment. This approach is consistent with recent observations that positive adjustment outcomes often are ignored in adjustment research despite empirical evidence that positive and negative affect states may co-occur in chronically stressful circumstances.11 Depressed mood was selected as the index of negative adjustment because depressive symptoms and depressive disorders are among the most common psychiatric sequelae of HIV infection.16 Two hypotheses were investigated in the study. First, it was hypothesized that positive meaning of illness would be associated with higher levels of psychological wellbeing and lower levels of depressed mood. Second, it was hypothesized that meaning of illness would make a significant unique contribution to the variance in psychological well-being and depressed mood over and above that provided by social support and problem-focused coping. In addition to testing these hypotheses, we investigated relationships between meaning and HIV disease markers in light of research suggesting that positive meaning may have protective HIV-related health effects.10 METHOD Participants Participants included individuals with symptomatic HIV disease and AIDS receiving medical treatment at a public outpatient HIV specialty clinic in an urban area. A total of 203 adult participants enrolled in the study. The characteristics of the participants, summarized in Table 1, were generally consistent with those of the population of 486
persons receiving HIV/AIDS care at the clinic where the study was conducted. Measures The Center for Epidemiologic Studies Depression Scale (CES-D Scale)17 is a 20-item self-report measure that has been widely used in research. The scale yields a single depression score and was used in this study as a measure of depressed mood. A score of 16 or greater is regarded as indicative of a clinically significant elevation in depressed mood. The Coping With Health Injuries and Problems Scale15 is a 32-item self-report instrument that measures coping with health difficulties. The scale consists of four subscales representing different coping dimensions. The instrumental coping subscale was used in this study as a measure of problem-focused coping because it assesses use of task-
TABLE 1.
Characteristics of Participants (Nⴔ203) in a Study of the Relationship of Meaning of Illness and Psychological Adjustment in Persons With HIV/ AIDS
Characteristic
Mean
SD
Age (years) Gender Male Female Transgender Education ⬍High school High school ⬎High school Monthly household income ⬍$1000 ⱖ$1000 Amount Race/ethnicity African American Caucasian Other HIV disease markers CD4 ⬍200 CD4⳱200–500 CD4 ⬎500 CD4 count Viral load Marital status Single Married/partnered Divorced Widowed Employment Yes No
39.75
7.35
$778.64
253.71 111,810
N
%
154 44 5
75.9 21.7 2.5
62 90 51
30.5 44.3 25.1
170 33
83.7 16.3
171 25 7
84.2 12.3 3.5
100 78 25
49.3 38.4 12.3
150 25 23 5
73.9 12.3 11.3 2.5
22 181
10.8 89.2
$937.41
222.33 196,400
Psychosomatics 44:6, November-December 2003
Farber et al. oriented (problem-focused) strategies in illness-related coping (e.g., “Find out about treatments.”). The General Well-Being Schedule18 is an 18-item selfreport scale designed to measure subjective psychological well-being and distress. The General Well-Being Schedule includes six subscales (anxiety, depression, positive wellbeing, self-control, vitality, and general health) and also yields an overall well-being score. Higher values on the General Well-Being Schedule correspond to greater degrees of psychological well-being, and lower values correspond to greater distress. Respondents are asked to respond on the basis of how they have been feeling during the previous month. The positive well-being subscale, which yields a very specific measure of positive psychological states (e.g., “How happy, satisfied, or pleased have you been with your personal life?”), was used in this study as a measure of psychological well-being. The Meaning of Illness Questionnaire—Self Report12 is a 30-item self-report scale that measures illness-related meaning appraisals encompassing five factor domains. These domains include 1) impact (e.g., “Has this illness negatively affected how you live day to day?”); 2) type of stress, attitude of harm, loss, threat, functional context (e.g., “Would you describe this illness as a loss?”); 3) degree of stress, change in commitments, secondary appraisal (e.g., “Are you pleased with the way you are handling things?”); 4) challenge, positive attitude, motivation, hope (e.g., “Would you describe this illness as a challenge?”); and 5) nonanticipated vulnerability (e.g., “Was this illness expected before the doctor told you?”). The scale also yields an overall index that was used as the measure of meaning in this study, with higher scores reflective of more positive meaning appraisals. The Medical Outcomes Study Social Support Survey19 is a 19-item self-report measure of perceived social support in individuals with chronic health conditions. The survey consists of four subscales as well as an overall index of functional social support, which was used in this study as a measure of social support. Procedure Study recruitment was conducted by research staff members who approached individuals waiting for routine clinic appointments and invited them to participate as study volunteers. Prospective participants were informed that if they chose to participate they would be asked to complete several questionnaires, were told the approximate time frame involved to complete the study, and were informed Psychosomatics 44:6, November-December 2003
that they would receive a small incentive for their participation. The study protocol was completed in a single research session. Before the research protocol was administered, study requirements were explained and written informed consent for participation was obtained. All participants first were administered the Rapid Assessment of Adult Literacy in Medicine,20 a brief screening instrument designed to evaluate adult reading literacy in health care environments. Participants who scored above a seventh-grade reading level on the Rapid Assessment of Adult Literacy in Medicine completed the study questionnaires on their own, and those who scored at or below a seventh-grade reading level had the questionnaires administered orally by research staff. All participants responded to a demographics questionnaire and the self-report research measures, a process that required 30–45 minutes to complete. HIV disease marker data (i.e., the most recent CD4 count and viral load) were abstracted from clinic laboratory records by research staff. On completion of the research protocol, participants received a small incentive ($10) for their involvement in the study. RESULTS The alpha level for all data analyses was set at p⬍0.01 to reduce the likelihood of type 1 error. Descriptive statistics computed for both predictor (problem-focused coping, social support, meaning of illness) and psychological adjustment (positive well-being, depressed mood) variables are shown in Table 2. Of note was a CES-D Scale mean score of 24.16, with 73% of the participants reporting a score ⱖ16, the cutoff score for clinically significant depressed mood. Before testing the study hypotheses, analyses were conducted to examine the relationships between psychological adjustment variables and participant characteristics (demographic variables and HIV disease markers). These analyses showed small but statistically significant correlations of CES-D Scale scores with income (r⳱–0.19, df⳱201, p⬍0.01) and age (r⳱0.16, df⳱201, p⬍0.01) and a significant difference in mean CES-D Scale scores between employed persons (mean⳱17.91, SD⳱10.79) and unemployed persons (mean⳱24.91, SD⳱11.83) (F⳱6.99, df⳱1, 202, p⬍0.01, R2⳱0.03). Analyses of relationships between disease markers and meaning of illness showed small but significant correlations of meaning with CD4 count (r⳱0.18, df⳱201, p⬍0.01) and viral load (r⳱–0.19, df⳱201, p⬍0.01). A log-10 transformation of viral load was computed for this analysis. 487
Adjustment to HIV/AIDS Meaning of Illness, Well-Being, and Depressed Mood As an initial step in testing study hypotheses, zeroorder correlations among the predictor and outcome variables were calculated and are presented in Table 3. Each of the predictor variables was significantly correlated in the expected direction with each outcome variable. Consistent with the study hypothesis that more positive meaning of illness would be associated with higher positive well-being and lower depressed mood, a statistically significant positive correlation was shown for meaning and positive wellbeing (r⳱0.50, df⳱201, p⬍0.01) and a negative correlation for meaning and depressed mood (r⳱–0.49, df⳱201, p⬍0.01). Correlations among the predictor variables also were statistically significant. Multicollinearity among these variables was not present. Meaning of Illness, Coping, and Social Support as Predictors of Psychological Adjustment Given that meaning of illness was significantly correlated with psychological well-being and depressed mood, the next step in data analysis was to evaluate the hypothesis that meaning of illness would make an independent contribution to the variance in psychological adjustment over and above that of social support and problem-focused coping. This hypothesis was tested by means of two separate TABLE 2.
hierarchical multiple regression models computed for the respective outcome variables of psychological well-being and depressed mood. Problem-focused coping was entered in the first step of each regression equation, followed by social support in the second step, and meaning of illness in the final step so that its unique contribution to the variability in the outcome variables could be evaluated. The results of the hierarchical regression analysis with psychological well-being as the outcome variable are shown in Table 4. The overall model for this analysis was significant (F⳱30.56, df⳱3, 199, p⬍0.001), with 31% of the variance in well-being predicted by the model as a whole. Problem-focused coping contributed a statistically significant 6% increment of the variance in psychological well-being in the first step of the regression equation (F change ⳱12.57, df⳱1, 201, p⬍0.001), with social support contributing an additional 10% increment of the variance (F change⳱25.05, df⳱1, 200, p⬍0.001) in the second step. Meaning of illness contributed a 15% increment in the variance in psychological well-being in the final step of the regression equation (F change⳱44.14, df⳱1, 199, p⬍0.001). With all variables entered into the equation, the results showed that meaning of illness (beta⳱0.41) made a unique contribution to the variance in psychological wellbeing over and above that of problem-focused coping and social support. Social support (beta⳱0.24) also made a significant unique contribution to the variance in the overall model, while problem-focused coping did not.
Scores on Measures of Coping, Social Support, Meaning of Illness, Psychological Well-Being, and Depressed Mood of Study Participants With HIV/AIDS (Nⴔ203)
Measure
Mean
SD
Range
Problem-focused coping (Coping With Health Injuries and Problems Scale) Social support (Medical Outcomes Study Social Support Survey) Meaning of illness (Meaning of Illness Questionnaire—Self Report) Positive well-being (General Well-Being Schedule) Depressive symptoms (Center for Epidemiologic Studies Depression Scale)
33.11 71.04 91.62 10.82 24.16
5.18 19.96 22.20 3.36 11.90
18–40 19–95 47–160 3–18 0–55
TABLE 3.
Correlations Among Measures of Coping, Social Support, Meaning of Illness, Psychological Well-Being, and Depressed Mood of Study Participants With HIV/AIDS (Nⴔ203) Correlationa
Variable 1. 2. 3. 4. 5.
Problem-focused coping (Coping With Health Injuries and Problems Scale) Social support (Medical Outcomes Study Social Support Survey) Meaning of illness (Meaning of Illness Questionnaire—Self Report) Positive well-being (General Well-Being Schedule) Depressive symptoms (Center for Epidemiologic Studies Depression Scale)
1
2
3
4
5
— 0.35* 0.23* 0.24* –0.23*
— 0.30* 0.39* –0.34*
— 0.50* –0.49*
— –0.60*
—
df ⳱ 201 *p⬍0.01
a
488
Psychosomatics 44:6, November-December 2003
Farber et al. The findings of the hierarchical multiple regression analysis with depressed mood as the outcome variable are displayed in Table 5. The overall model for this analysis was significant (F⳱26.68, df⳱3, 199, p⬍0.001), predicting 29% of the variance in depressed mood. Problemfocused coping contributed 5% of the variance in depressed mood (F change⳱10.74, df⳱1, 201, p⬍0.001) in the first step of the regression equation, while social support provided an additional 8% of explained variance (F change⳱17.98, df⳱1, 200, p⬍0.001) in the second step. When entered in the final step of the regression model, meaning of illness contributed an additional 16% of the variance in depressed mood (F change⳱44.04, df⳱1, 199, p⬍0.001). With all variables in the model controlled, meaning of illness (beta⳱–0.42) made a unique contribution to the variance in depressed mood over and above that of problem-focused coping and social support. Social support (beta⳱–0.19) also made a significant unique contribution, but problem-focused coping did not. DISCUSSION Consistent with the study hypotheses, the findings showed that individuals who ascribed more positive meaning to their illness also reported higher levels of psychological well-being and lower levels of depressed mood. In addition, meaning of illness contributed independently to predicting both psychological well-being and depressed mood even after the contributions of social support and problemfocused coping were taken into account. Some investigaTABLE 4.
tors recently have proposed that situational meaning can be conceptualized as a type of coping strategy called meaning-focused coping that involves changing one’s construals of a stressful situation rather than attempting to change the situation per se.4,9 Meaning-focused coping includes strategies such as positive reappraisal (e.g., construing HIV disease as creating opportunities for personal growth) that favorably affect adjustment even if a stressor cannot readily be alleviated or changed. In a recent study involving both HIV-seropositive and HIV-affected seronegative gay men, problem-focused coping had the greatest effect on self-reported depressive symptoms when stressors were appraised as controllable, while meaning was inversely related to depressive symptoms regardless of the degree to which stressful circumstances were perceived as controllable.9 These findings, when taken together with the results of the study reported here, underscore the need to give greater attention to situational meaning in HIV/AIDS stress and coping models. While not specifically addressed in the study, the significant positive correlations among meaning, problemfocused coping, and social support invite speculation on the specific ways in which these variables might be related. For instance, meaning-making patterns may influence or be influenced by social relationships from which one gets input on HIV-related concerns. Social support networks can affect problem-focused coping activities, such as seeking advice and information. Aspects of problem-focused coping (e.g., information seeking) may influence construction of meaning. Future research could examine empiri-
Hierarchical Multiple Regression Model of Relationship of Psychological Well-Being With Measures of Coping, Social Support, and Meaning of Illness of Study Participants with HIV/AIDS (Nⴔ203)
Step in Regression Model Step 1: problem-focused coping Step 2: social support Step 3: meaning of illness
R2
R2 Change
F Change
df
Beta (final step)
0.06 0.16 0.31
0.06 0.10 0.15
12.57* 25.05* 44.14*
1, 201 1, 200 1, 199
0.06 0.24* 0.41*
*p⬍0.001
TABLE 5.
Hierarchical Multiple Regression Model of Relationship of Depressed Mood With Measures of Coping, Social Support, and Meaning of Illness of Study Participants with HIV/AIDS (Nⴔ203)
Step in Regression Model Step 1: problem-focused coping Step 2: social support Step 3: meaning of illness
R2
R2 Change
F Change
df
Beta (final step)
0.05 0.13 0.29
0.05 0.08 0.16
10.74** 17.98** 44.04**
1, 201 1, 200 1, 199
–0.06 –0.19* –0.42**
*p⬍0.01 **p⬍0.001
Psychosomatics 44:6, November-December 2003
489
Adjustment to HIV/AIDS cally how these variables might interact and overlap in contributing to adjustment outcomes. Although the finding was not central to the study hypotheses, it is notable that clinically significant levels of depressed mood on the CES-D Scale were shown for 73% of study participants. While this proportion is substantially higher than typically is reported in the literature on depression in HIV/AIDS,16 this result is roughly consistent with CES-D Scale findings in previous research involving patients in a public health setting who had demographic characteristics similar to those of the participants in the current study.21 Definitive empirical interpretation of the high depression scores found in this study is beyond the scope of this investigation. One possibility, however, is that they reflect the considerable emotional burden that presumably is associated with the simultaneous challenges of living with HIV/AIDS and managing the psychosocial stresses associated with poverty, including a scarcity of financial and material resources. Given prior research showing that depressive symptoms may increase as HIV infection progresses to AIDS,16 the fact that the participants were persons with symptomatic HIV disease and AIDS also may be a factor in the observed depression scores. Further research could discern the relative contributions of these factors, along with such variables as life stress burden, in predicting psychological distress levels. It is also interesting to note that meaning of illness was positively correlated with CD4 count and negatively correlated with viral load. While the practical significance of this finding is unclear given the small size of these correlations, these results are consistent with recent longitudinal research demonstrating protective HIV-related health effects associated with positive meaning, including lower degrees of decline in CD4 count and lower AIDS-related mortality rates.10 Further research in this area is needed. The importance of attending to meaning in HIVrelated psychotherapy has been underscored in the literature across the spectrum of therapeutic modalities and orientations, including cognitive,22 psychodynamic,23 and existential24 approaches. Although this study was not a treatment study, the results provide empirical support for the idea that therapeutic attention to HIV-related meaning in the context of a comprehensive biopsychosocial treatment approach may help increase psychological well-being and reduce distress. Psychotherapists can help their patients explore the personal significance and effects of HIV/ AIDS and encourage construals of HIV-related realities that allow for pursuit of realistic options and choices within the acknowledged limits imposed by the disease. In this 490
context, therapists may actively challenge HIV-related appraisals of their patients that are too rigidly or loosely held or applied too narrowly or broadly. It is also important to assess controllability of HIV-related stressors, since a clinical focus on meaning might be particularly relevant when the stressor is uncontrollable, whereas controllable stressors might suggest a therapeutic focus that facilitates problem-focused coping activities along with meaning-focused coping.9 In addition, meaning-related themes regarding life purpose and commitment in the context of living with HIV disease can be explored in treatment. This study was limited by several factors. While the study results showed clear relationships between meaning of illness and psychological adjustment, causal inferences cannot be made on the basis of these findings. Further, the cross-sectional design precluded definitive interpretation of the nature of the observed relationships among study variables, including evaluation of how they interact over time. A longitudinal design would be a useful next step in research on this topic, as it would provide a means to examine the patterns of covariation between meaning and adjustment factors over time, as well as the interaction of meaning with social support and problem-focused coping over time in relation to psychological adjustment outcomes. An additional limitation was the use of self-report measures to the exclusion of interviewer-rated measures, as self-report scales may be susceptible to subjective biases. More objective information could be obtained in future studies if research measures included interviewer rating scales and/or structured interviews designed to evaluate psychological functioning, including psychodiagnostic information. CONCLUSIONS The findings of this study suggest that meaning is worthy of further systematic investigation in light of its relevance for existing empirical models of HIV-related adjustment and approaches to mental health intervention. Given the small number of published research reports in this area, additional research is needed to examine more fully the mechanisms through which meaning may affect adjustment outcomes. Future investigations also could address the role of meaning relative to a broad spectrum of biopsychosocial variables known to influence HIV-associated psychological adjustment patterns that were not included in this study. Two examples are life stress burden and physical disease symptom ratings. In addition, research on factors that promote positive HIV-related meaning appraisPsychosomatics 44:6, November-December 2003
Farber et al. als is needed. This research could provide useful empirically based information regarding how meaning-focused interventions might be incorporated into existing psychotherapeutic practice with individuals living with HIV disease. Future research also could more specifically explore the utility of meaning of illness as a predictor of psycho-
pathology and comorbid psychiatric disorders in persons with HIV disease. The degree to which meaning may be relevant to HIV-related health practices, including adherence to medical protocols and HIV risk behavior prevention, also would be worthy of exploration in future research.
References
1. Frankl VE: The Will to Meaning: Foundations and Applications of Logotherapy. New York, Plume, 1969 2. Yalom I: Existential Psychotherapy. New York, Basic Books, 1980 3. Janoff-Bulman R, McPherson Frantz C: The impact of trauma on meaning: from meaningless world to meaningful life, in The Transformation of Meaning in Psychological Therapies: Integrating Theory and Practice. Edited by Power M, Brewin CR. Chichester, England, John Wiley & Sons, 1997, pp 91–106 4. Park CL, Folkman S: Meaning in the context of stress and coping. Rev Gen Psychol 1997; 1:115–144 5. Taylor SE: Adjustment to threatening events: a theory of cognitive adaptation. Am Psychol 1983; 38:1161–1173 6. Janoff-Bulman R: Assumptive worlds and the stress of traumatic events: applications of the schema construct. Soc Cognition 1989; 7:113–136 7. Taylor SE, Kemeny ME, Reed GM, Bower JE, Gruenewald TL: Psychological resources, positive illusions, and health. Am Psychol 2000; 55:99–109 8. Schwartzberg SS: Struggling for meaning: how HIV-positive gay men make sense of AIDS. Professional Psychol Res Practice 1993; 24:483–490 9. Park CL, Folkman S, Bostrom A: Appraisals of controllability and coping in caregivers and HIVⳭ men: testing the goodness-of-fit hypothesis. J Consult Clin Psychol 2001; 69:481–488 10. Bower JE, Kemeny ME, Taylor SE, Fahey JL: Cognitive processing, discovery of meaning, CD4 decline, and AIDS-related mortality among bereaved HIV-seropositive men. J Consult Clin Psychol 1998; 66:979–986 11. Folkman S, Moskowitz JT: Positive affect and the other side of coping. Am Psychol 2000; 55:647–654 12. Weir R, Browne G, Roberts J, Tunks E, Gafni A: The Meaning of Illness Questionnaire: further evidence for its reliability and validity. Pain 1994; 58:377–386
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13. Blaney NT, Goodkin K, Feaster D, Morgan R, Millon C, Szapocznik J, Eisdorfer C: A psychosocial model of distress over time in early HIV-1 infection: the role of life stressors, social support and coping. Psychol Health 1997; 12:633–653 14. Pakenham KI, Rinaldis M: The role of illness, resources, appraisal, and coping strategies in adjustment to HIV/AIDS: the direct and buffering effects. J Behav Med 2001; 24:259–279 15. Endler NS, Parker JDA, Summerfeldt LJ: Coping with health problems: developing a reliable and valid multidimensional measure. Psychol Assess 1998; 10:195–205 16. Lyketsos CG, Treisman GJ: Mood disorders in HIV infection. Psychiatr Annals 2001; 31:45–49 17. Radloff LS: The CES-D Scale: a self-report depression scale for research in the general population. J Applied Psychol Measurement 1977; 1:385–401 18. Fazio AF: A concurrent validational study of the NCHS General Well-Being Schedule. Vital Health Stat 2 1977; 73:1–53 19. Sherbourne CD, Stewart AL: The MOS Social Support Survey. Soc Sci Med 1991; 32:705–714 20. Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA: Rapid Estimate of Adult Literacy in Medicine: a shortened screening instrument. Fam Med 1993; 25:391–395 21. Carels RA, Baucom DH, Leone P, Rigney A: Psychosocial factors and psychological symptoms: HIV in a public health setting. J Community Psychol 1998; 26:145–162 22. Gluhoski VL: Cognitive therapy for clients newly diagnosed as HIV-positive. Psychotherapy 1996; 33:441–448 23. Weiss JJ: Psychotherapy with HIV-positive gay men: a psychodynamic perspective. Am J Psychother 1997; 51:31–44 24. Farber EW: Existential treatment with HIV/AIDS clients, in Comprehensive Handbook of Psychotherapy, vol 3: Interpersonal, Humanistic, Existential. Edited by Kaslow FW, Massey RF, Massey SD. New York, John Wiley & Sons, 2002, pp 303–331
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The authors explored the relationship between meaning of illness and psychological adjustment in persons with symptomatic HIV disease and AIDS. A group of 203 participants completed selfreport questionnaires measuring meaning of illness, problem-focused coping, social support, psychological well-being, and depressed mood. Positive meaning was associated with a higher level of psychological well-being and a lower level of depressed mood. Further, meaning contributed significantly to predicting both psychological well-being and depressed mood over and above the contributions of problem-focused coping and social support. These findings have implications for HIV coping and adjustment models and for HIV-related psychotherapy. (Psychosomatics 2003; 44:485–491)
T
he significance of meaning-making in psychological health and dysfunction has long been recognized in the clinical literature,1,2 although researchers have only recently investigated meaning empirically in models of psychological adjustment to severe adverse life events.3–5 This research has shown that psychologically traumatic events, including severe or life-threatening physical illnesses, can challenge core personal assumptions and expectations regarding the self and the world. In response, one’s fundamental meaning systems may be called into question, including how one makes sense of the world and defines one’s values, commitments, and sentiments regarding what is personally significant or worthy in life.3,6,7 Finding positive meaning in the experience, including finding new perspectives and insights regarding the self and the world, may favorably affect adjustment to adversity.7 Consistent with this idea, a handful of published investigations in the literature on HIV have suggested that positive meaning may have a beneficial effect on psychological adjustment to the disease,8,9 and may even be associated with health protective effects.10 Despite such findings, meaning has received surprisingly little attention in the research literature on HIV-related adjustment. The purpose of this study, therefore, was to add to this literature Psychosomatics 44:6, November-December 2003
by investigating the relationship between meaning and patterns of psychological adjustment in individuals with symptomatic HIV disease and AIDS. The study was specifically concerned with situational meaning,11 defined as a constellation of appraisals made by an individual regarding the personal significance, implications, and consequences of a specific life circumstance. HIV-related situational meaning may include construals of the personal effect and gravity of the disease, attitudes and expectancies regarding disease-related threats and challenges, and beliefs about one’s capacities for managing HIV-associated stressors.11,12 Situational meaning as operationalized here has been distinguished conceptually from global meaning in the literature on stress and coping.4,11 Global meaning refers to fundamental personal assumptions and beliefs
Received Aug. 20, 2002; revision received Feb. 25, 2003; accepted March 17, 2003. From the Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, Atlanta; and the Department of Clinical Psychology, Argosy University, Atlanta. Address reprint requests to Dr. Farber, Grady Infectious Disease Program, 341 Ponce de Leon Ave., Atlanta, GA 30308; [email protected] (e-mail). Supported by Emory Medical Care Foundation research grant 97008. Copyright 䉷 2003 The Academy of Psychosomatic Medicine.
485
Adjustment to HIV/AIDS about the purpose, comprehensibility, coherence, and value of one’s life across a spectrum of life circumstances.1–4,11 In line with emerging research trends emphasizing identification of factors that predict positive psychological adaptation,7 a major objective of this study was to investigate meaning alongside psychosocial variables empirically known to predict favorable psychological adjustment to adversity. Two such variables, social support and problem-focused coping (e.g., problem-solving, information seeking), were selected for this purpose because their relationship to positive adjustment to illness, including HIVrelated adjustment, is empirically well-established.9,13–15 The role of emotion-focused coping was not addressed in this study because it tends to be associated with poorer adjustment outcomes.9,15 The study incorporated measures of both positive (psychological well-being) and negative (depressed mood) dimensions of psychological adjustment. This approach is consistent with recent observations that positive adjustment outcomes often are ignored in adjustment research despite empirical evidence that positive and negative affect states may co-occur in chronically stressful circumstances.11 Depressed mood was selected as the index of negative adjustment because depressive symptoms and depressive disorders are among the most common psychiatric sequelae of HIV infection.16 Two hypotheses were investigated in the study. First, it was hypothesized that positive meaning of illness would be associated with higher levels of psychological wellbeing and lower levels of depressed mood. Second, it was hypothesized that meaning of illness would make a significant unique contribution to the variance in psychological well-being and depressed mood over and above that provided by social support and problem-focused coping. In addition to testing these hypotheses, we investigated relationships between meaning and HIV disease markers in light of research suggesting that positive meaning may have protective HIV-related health effects.10 METHOD Participants Participants included individuals with symptomatic HIV disease and AIDS receiving medical treatment at a public outpatient HIV specialty clinic in an urban area. A total of 203 adult participants enrolled in the study. The characteristics of the participants, summarized in Table 1, were generally consistent with those of the population of 486
persons receiving HIV/AIDS care at the clinic where the study was conducted. Measures The Center for Epidemiologic Studies Depression Scale (CES-D Scale)17 is a 20-item self-report measure that has been widely used in research. The scale yields a single depression score and was used in this study as a measure of depressed mood. A score of 16 or greater is regarded as indicative of a clinically significant elevation in depressed mood. The Coping With Health Injuries and Problems Scale15 is a 32-item self-report instrument that measures coping with health difficulties. The scale consists of four subscales representing different coping dimensions. The instrumental coping subscale was used in this study as a measure of problem-focused coping because it assesses use of task-
TABLE 1.
Characteristics of Participants (Nⴔ203) in a Study of the Relationship of Meaning of Illness and Psychological Adjustment in Persons With HIV/ AIDS
Characteristic
Mean
SD
Age (years) Gender Male Female Transgender Education ⬍High school High school ⬎High school Monthly household income ⬍$1000 ⱖ$1000 Amount Race/ethnicity African American Caucasian Other HIV disease markers CD4 ⬍200 CD4⳱200–500 CD4 ⬎500 CD4 count Viral load Marital status Single Married/partnered Divorced Widowed Employment Yes No
39.75
7.35
$778.64
253.71 111,810
N
%
154 44 5
75.9 21.7 2.5
62 90 51
30.5 44.3 25.1
170 33
83.7 16.3
171 25 7
84.2 12.3 3.5
100 78 25
49.3 38.4 12.3
150 25 23 5
73.9 12.3 11.3 2.5
22 181
10.8 89.2
$937.41
222.33 196,400
Psychosomatics 44:6, November-December 2003
Farber et al. oriented (problem-focused) strategies in illness-related coping (e.g., “Find out about treatments.”). The General Well-Being Schedule18 is an 18-item selfreport scale designed to measure subjective psychological well-being and distress. The General Well-Being Schedule includes six subscales (anxiety, depression, positive wellbeing, self-control, vitality, and general health) and also yields an overall well-being score. Higher values on the General Well-Being Schedule correspond to greater degrees of psychological well-being, and lower values correspond to greater distress. Respondents are asked to respond on the basis of how they have been feeling during the previous month. The positive well-being subscale, which yields a very specific measure of positive psychological states (e.g., “How happy, satisfied, or pleased have you been with your personal life?”), was used in this study as a measure of psychological well-being. The Meaning of Illness Questionnaire—Self Report12 is a 30-item self-report scale that measures illness-related meaning appraisals encompassing five factor domains. These domains include 1) impact (e.g., “Has this illness negatively affected how you live day to day?”); 2) type of stress, attitude of harm, loss, threat, functional context (e.g., “Would you describe this illness as a loss?”); 3) degree of stress, change in commitments, secondary appraisal (e.g., “Are you pleased with the way you are handling things?”); 4) challenge, positive attitude, motivation, hope (e.g., “Would you describe this illness as a challenge?”); and 5) nonanticipated vulnerability (e.g., “Was this illness expected before the doctor told you?”). The scale also yields an overall index that was used as the measure of meaning in this study, with higher scores reflective of more positive meaning appraisals. The Medical Outcomes Study Social Support Survey19 is a 19-item self-report measure of perceived social support in individuals with chronic health conditions. The survey consists of four subscales as well as an overall index of functional social support, which was used in this study as a measure of social support. Procedure Study recruitment was conducted by research staff members who approached individuals waiting for routine clinic appointments and invited them to participate as study volunteers. Prospective participants were informed that if they chose to participate they would be asked to complete several questionnaires, were told the approximate time frame involved to complete the study, and were informed Psychosomatics 44:6, November-December 2003
that they would receive a small incentive for their participation. The study protocol was completed in a single research session. Before the research protocol was administered, study requirements were explained and written informed consent for participation was obtained. All participants first were administered the Rapid Assessment of Adult Literacy in Medicine,20 a brief screening instrument designed to evaluate adult reading literacy in health care environments. Participants who scored above a seventh-grade reading level on the Rapid Assessment of Adult Literacy in Medicine completed the study questionnaires on their own, and those who scored at or below a seventh-grade reading level had the questionnaires administered orally by research staff. All participants responded to a demographics questionnaire and the self-report research measures, a process that required 30–45 minutes to complete. HIV disease marker data (i.e., the most recent CD4 count and viral load) were abstracted from clinic laboratory records by research staff. On completion of the research protocol, participants received a small incentive ($10) for their involvement in the study. RESULTS The alpha level for all data analyses was set at p⬍0.01 to reduce the likelihood of type 1 error. Descriptive statistics computed for both predictor (problem-focused coping, social support, meaning of illness) and psychological adjustment (positive well-being, depressed mood) variables are shown in Table 2. Of note was a CES-D Scale mean score of 24.16, with 73% of the participants reporting a score ⱖ16, the cutoff score for clinically significant depressed mood. Before testing the study hypotheses, analyses were conducted to examine the relationships between psychological adjustment variables and participant characteristics (demographic variables and HIV disease markers). These analyses showed small but statistically significant correlations of CES-D Scale scores with income (r⳱–0.19, df⳱201, p⬍0.01) and age (r⳱0.16, df⳱201, p⬍0.01) and a significant difference in mean CES-D Scale scores between employed persons (mean⳱17.91, SD⳱10.79) and unemployed persons (mean⳱24.91, SD⳱11.83) (F⳱6.99, df⳱1, 202, p⬍0.01, R2⳱0.03). Analyses of relationships between disease markers and meaning of illness showed small but significant correlations of meaning with CD4 count (r⳱0.18, df⳱201, p⬍0.01) and viral load (r⳱–0.19, df⳱201, p⬍0.01). A log-10 transformation of viral load was computed for this analysis. 487
Adjustment to HIV/AIDS Meaning of Illness, Well-Being, and Depressed Mood As an initial step in testing study hypotheses, zeroorder correlations among the predictor and outcome variables were calculated and are presented in Table 3. Each of the predictor variables was significantly correlated in the expected direction with each outcome variable. Consistent with the study hypothesis that more positive meaning of illness would be associated with higher positive well-being and lower depressed mood, a statistically significant positive correlation was shown for meaning and positive wellbeing (r⳱0.50, df⳱201, p⬍0.01) and a negative correlation for meaning and depressed mood (r⳱–0.49, df⳱201, p⬍0.01). Correlations among the predictor variables also were statistically significant. Multicollinearity among these variables was not present. Meaning of Illness, Coping, and Social Support as Predictors of Psychological Adjustment Given that meaning of illness was significantly correlated with psychological well-being and depressed mood, the next step in data analysis was to evaluate the hypothesis that meaning of illness would make an independent contribution to the variance in psychological adjustment over and above that of social support and problem-focused coping. This hypothesis was tested by means of two separate TABLE 2.
hierarchical multiple regression models computed for the respective outcome variables of psychological well-being and depressed mood. Problem-focused coping was entered in the first step of each regression equation, followed by social support in the second step, and meaning of illness in the final step so that its unique contribution to the variability in the outcome variables could be evaluated. The results of the hierarchical regression analysis with psychological well-being as the outcome variable are shown in Table 4. The overall model for this analysis was significant (F⳱30.56, df⳱3, 199, p⬍0.001), with 31% of the variance in well-being predicted by the model as a whole. Problem-focused coping contributed a statistically significant 6% increment of the variance in psychological well-being in the first step of the regression equation (F change ⳱12.57, df⳱1, 201, p⬍0.001), with social support contributing an additional 10% increment of the variance (F change⳱25.05, df⳱1, 200, p⬍0.001) in the second step. Meaning of illness contributed a 15% increment in the variance in psychological well-being in the final step of the regression equation (F change⳱44.14, df⳱1, 199, p⬍0.001). With all variables entered into the equation, the results showed that meaning of illness (beta⳱0.41) made a unique contribution to the variance in psychological wellbeing over and above that of problem-focused coping and social support. Social support (beta⳱0.24) also made a significant unique contribution to the variance in the overall model, while problem-focused coping did not.
Scores on Measures of Coping, Social Support, Meaning of Illness, Psychological Well-Being, and Depressed Mood of Study Participants With HIV/AIDS (Nⴔ203)
Measure
Mean
SD
Range
Problem-focused coping (Coping With Health Injuries and Problems Scale) Social support (Medical Outcomes Study Social Support Survey) Meaning of illness (Meaning of Illness Questionnaire—Self Report) Positive well-being (General Well-Being Schedule) Depressive symptoms (Center for Epidemiologic Studies Depression Scale)
33.11 71.04 91.62 10.82 24.16
5.18 19.96 22.20 3.36 11.90
18–40 19–95 47–160 3–18 0–55
TABLE 3.
Correlations Among Measures of Coping, Social Support, Meaning of Illness, Psychological Well-Being, and Depressed Mood of Study Participants With HIV/AIDS (Nⴔ203) Correlationa
Variable 1. 2. 3. 4. 5.
Problem-focused coping (Coping With Health Injuries and Problems Scale) Social support (Medical Outcomes Study Social Support Survey) Meaning of illness (Meaning of Illness Questionnaire—Self Report) Positive well-being (General Well-Being Schedule) Depressive symptoms (Center for Epidemiologic Studies Depression Scale)
1
2
3
4
5
— 0.35* 0.23* 0.24* –0.23*
— 0.30* 0.39* –0.34*
— 0.50* –0.49*
— –0.60*
—
df ⳱ 201 *p⬍0.01
a
488
Psychosomatics 44:6, November-December 2003
Farber et al. The findings of the hierarchical multiple regression analysis with depressed mood as the outcome variable are displayed in Table 5. The overall model for this analysis was significant (F⳱26.68, df⳱3, 199, p⬍0.001), predicting 29% of the variance in depressed mood. Problemfocused coping contributed 5% of the variance in depressed mood (F change⳱10.74, df⳱1, 201, p⬍0.001) in the first step of the regression equation, while social support provided an additional 8% of explained variance (F change⳱17.98, df⳱1, 200, p⬍0.001) in the second step. When entered in the final step of the regression model, meaning of illness contributed an additional 16% of the variance in depressed mood (F change⳱44.04, df⳱1, 199, p⬍0.001). With all variables in the model controlled, meaning of illness (beta⳱–0.42) made a unique contribution to the variance in depressed mood over and above that of problem-focused coping and social support. Social support (beta⳱–0.19) also made a significant unique contribution, but problem-focused coping did not. DISCUSSION Consistent with the study hypotheses, the findings showed that individuals who ascribed more positive meaning to their illness also reported higher levels of psychological well-being and lower levels of depressed mood. In addition, meaning of illness contributed independently to predicting both psychological well-being and depressed mood even after the contributions of social support and problemfocused coping were taken into account. Some investigaTABLE 4.
tors recently have proposed that situational meaning can be conceptualized as a type of coping strategy called meaning-focused coping that involves changing one’s construals of a stressful situation rather than attempting to change the situation per se.4,9 Meaning-focused coping includes strategies such as positive reappraisal (e.g., construing HIV disease as creating opportunities for personal growth) that favorably affect adjustment even if a stressor cannot readily be alleviated or changed. In a recent study involving both HIV-seropositive and HIV-affected seronegative gay men, problem-focused coping had the greatest effect on self-reported depressive symptoms when stressors were appraised as controllable, while meaning was inversely related to depressive symptoms regardless of the degree to which stressful circumstances were perceived as controllable.9 These findings, when taken together with the results of the study reported here, underscore the need to give greater attention to situational meaning in HIV/AIDS stress and coping models. While not specifically addressed in the study, the significant positive correlations among meaning, problemfocused coping, and social support invite speculation on the specific ways in which these variables might be related. For instance, meaning-making patterns may influence or be influenced by social relationships from which one gets input on HIV-related concerns. Social support networks can affect problem-focused coping activities, such as seeking advice and information. Aspects of problem-focused coping (e.g., information seeking) may influence construction of meaning. Future research could examine empiri-
Hierarchical Multiple Regression Model of Relationship of Psychological Well-Being With Measures of Coping, Social Support, and Meaning of Illness of Study Participants with HIV/AIDS (Nⴔ203)
Step in Regression Model Step 1: problem-focused coping Step 2: social support Step 3: meaning of illness
R2
R2 Change
F Change
df
Beta (final step)
0.06 0.16 0.31
0.06 0.10 0.15
12.57* 25.05* 44.14*
1, 201 1, 200 1, 199
0.06 0.24* 0.41*
*p⬍0.001
TABLE 5.
Hierarchical Multiple Regression Model of Relationship of Depressed Mood With Measures of Coping, Social Support, and Meaning of Illness of Study Participants with HIV/AIDS (Nⴔ203)
Step in Regression Model Step 1: problem-focused coping Step 2: social support Step 3: meaning of illness
R2
R2 Change
F Change
df
Beta (final step)
0.05 0.13 0.29
0.05 0.08 0.16
10.74** 17.98** 44.04**
1, 201 1, 200 1, 199
–0.06 –0.19* –0.42**
*p⬍0.01 **p⬍0.001
Psychosomatics 44:6, November-December 2003
489
Adjustment to HIV/AIDS cally how these variables might interact and overlap in contributing to adjustment outcomes. Although the finding was not central to the study hypotheses, it is notable that clinically significant levels of depressed mood on the CES-D Scale were shown for 73% of study participants. While this proportion is substantially higher than typically is reported in the literature on depression in HIV/AIDS,16 this result is roughly consistent with CES-D Scale findings in previous research involving patients in a public health setting who had demographic characteristics similar to those of the participants in the current study.21 Definitive empirical interpretation of the high depression scores found in this study is beyond the scope of this investigation. One possibility, however, is that they reflect the considerable emotional burden that presumably is associated with the simultaneous challenges of living with HIV/AIDS and managing the psychosocial stresses associated with poverty, including a scarcity of financial and material resources. Given prior research showing that depressive symptoms may increase as HIV infection progresses to AIDS,16 the fact that the participants were persons with symptomatic HIV disease and AIDS also may be a factor in the observed depression scores. Further research could discern the relative contributions of these factors, along with such variables as life stress burden, in predicting psychological distress levels. It is also interesting to note that meaning of illness was positively correlated with CD4 count and negatively correlated with viral load. While the practical significance of this finding is unclear given the small size of these correlations, these results are consistent with recent longitudinal research demonstrating protective HIV-related health effects associated with positive meaning, including lower degrees of decline in CD4 count and lower AIDS-related mortality rates.10 Further research in this area is needed. The importance of attending to meaning in HIVrelated psychotherapy has been underscored in the literature across the spectrum of therapeutic modalities and orientations, including cognitive,22 psychodynamic,23 and existential24 approaches. Although this study was not a treatment study, the results provide empirical support for the idea that therapeutic attention to HIV-related meaning in the context of a comprehensive biopsychosocial treatment approach may help increase psychological well-being and reduce distress. Psychotherapists can help their patients explore the personal significance and effects of HIV/ AIDS and encourage construals of HIV-related realities that allow for pursuit of realistic options and choices within the acknowledged limits imposed by the disease. In this 490
context, therapists may actively challenge HIV-related appraisals of their patients that are too rigidly or loosely held or applied too narrowly or broadly. It is also important to assess controllability of HIV-related stressors, since a clinical focus on meaning might be particularly relevant when the stressor is uncontrollable, whereas controllable stressors might suggest a therapeutic focus that facilitates problem-focused coping activities along with meaning-focused coping.9 In addition, meaning-related themes regarding life purpose and commitment in the context of living with HIV disease can be explored in treatment. This study was limited by several factors. While the study results showed clear relationships between meaning of illness and psychological adjustment, causal inferences cannot be made on the basis of these findings. Further, the cross-sectional design precluded definitive interpretation of the nature of the observed relationships among study variables, including evaluation of how they interact over time. A longitudinal design would be a useful next step in research on this topic, as it would provide a means to examine the patterns of covariation between meaning and adjustment factors over time, as well as the interaction of meaning with social support and problem-focused coping over time in relation to psychological adjustment outcomes. An additional limitation was the use of self-report measures to the exclusion of interviewer-rated measures, as self-report scales may be susceptible to subjective biases. More objective information could be obtained in future studies if research measures included interviewer rating scales and/or structured interviews designed to evaluate psychological functioning, including psychodiagnostic information. CONCLUSIONS The findings of this study suggest that meaning is worthy of further systematic investigation in light of its relevance for existing empirical models of HIV-related adjustment and approaches to mental health intervention. Given the small number of published research reports in this area, additional research is needed to examine more fully the mechanisms through which meaning may affect adjustment outcomes. Future investigations also could address the role of meaning relative to a broad spectrum of biopsychosocial variables known to influence HIV-associated psychological adjustment patterns that were not included in this study. Two examples are life stress burden and physical disease symptom ratings. In addition, research on factors that promote positive HIV-related meaning appraisPsychosomatics 44:6, November-December 2003
Farber et al. als is needed. This research could provide useful empirically based information regarding how meaning-focused interventions might be incorporated into existing psychotherapeutic practice with individuals living with HIV disease. Future research also could more specifically explore the utility of meaning of illness as a predictor of psycho-
pathology and comorbid psychiatric disorders in persons with HIV disease. The degree to which meaning may be relevant to HIV-related health practices, including adherence to medical protocols and HIV risk behavior prevention, also would be worthy of exploration in future research.
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13. Blaney NT, Goodkin K, Feaster D, Morgan R, Millon C, Szapocznik J, Eisdorfer C: A psychosocial model of distress over time in early HIV-1 infection: the role of life stressors, social support and coping. Psychol Health 1997; 12:633–653 14. Pakenham KI, Rinaldis M: The role of illness, resources, appraisal, and coping strategies in adjustment to HIV/AIDS: the direct and buffering effects. J Behav Med 2001; 24:259–279 15. Endler NS, Parker JDA, Summerfeldt LJ: Coping with health problems: developing a reliable and valid multidimensional measure. Psychol Assess 1998; 10:195–205 16. Lyketsos CG, Treisman GJ: Mood disorders in HIV infection. Psychiatr Annals 2001; 31:45–49 17. Radloff LS: The CES-D Scale: a self-report depression scale for research in the general population. J Applied Psychol Measurement 1977; 1:385–401 18. Fazio AF: A concurrent validational study of the NCHS General Well-Being Schedule. Vital Health Stat 2 1977; 73:1–53 19. Sherbourne CD, Stewart AL: The MOS Social Support Survey. Soc Sci Med 1991; 32:705–714 20. Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA: Rapid Estimate of Adult Literacy in Medicine: a shortened screening instrument. Fam Med 1993; 25:391–395 21. Carels RA, Baucom DH, Leone P, Rigney A: Psychosocial factors and psychological symptoms: HIV in a public health setting. J Community Psychol 1998; 26:145–162 22. Gluhoski VL: Cognitive therapy for clients newly diagnosed as HIV-positive. Psychotherapy 1996; 33:441–448 23. Weiss JJ: Psychotherapy with HIV-positive gay men: a psychodynamic perspective. Am J Psychother 1997; 51:31–44 24. Farber EW: Existential treatment with HIV/AIDS clients, in Comprehensive Handbook of Psychotherapy, vol 3: Interpersonal, Humanistic, Existential. Edited by Kaslow FW, Massey RF, Massey SD. New York, John Wiley & Sons, 2002, pp 303–331
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