Open Access

Finding meaning in life while living with HIV: validation of a novel HIV meaningfulness scale among HIV-infected participants living in Tennessee

BMC Psychology20153:15

DOI: 10.1186/s40359-015-0070-7

Received: 27 June 2014

Accepted: 22 April 2015

Published: 2 May 2015

Abstract

Background

People living with HIV who maintain a positive outlook on their future may manage stress better than those who do not, leading to improved coping behaviors and better health outcomes.

Methods

While studying 125 HIV+ adults participating in two clinical trials of expressive writing we assessed their HIV-specific meaningfulness of life with a short, unidimensional scale (the HIVMS).

Results

The HIVMS had a strong Cronbach’s alpha (0.80) and acceptable test-retest reliability (0.70). HIVMS scores were strongly correlated with measures of perceived control, optimism, and psychological well-being. Participants with lower HIVMS scores had higher probability of non-adherence to antiretroviral medication, suggesting a decreased ability to manage their illness successfully. Neither the control nor expressive writing intervention groups showed increased HIVMS scores.

Conclusions

Future research is necessary to determine the effect of HIV meaning on long-term health outcomes and to develop interventions that can significantly improve a person’s perception of their meaning in life.

Keywords

HIV Meaning Psychological well-being Purpose In life HIV/AIDS Southern US

Background

New advances in HIV treatment have effectively made HIV a manageable chronic disease. A 20 year old diagnosed HIV+ between 2006 and 2007 could expect to live an additional 51 years, resulting in a life expectancy of 71 years (Hogg et al. 2013). New antiretroviral medications result in fewer physical side effects and have simplified dosing. Despite advances in treatment, diagnosis with HIV infection is still traumatic. Many people living with HIV experience internalized-stigma related to their HIV status (Berger et al. 2001; Van Rie et al. 2008), stigma and discrimination from family, friends, potential sexual partners, and their communities (Phillips et al. 2011; Loutfy et al. 2012; Fair and Albright 2012; Audet et al. 2013; Lichtenstein et al. 2002), side effects from HIV medications (Panel on Antiretroviral Guidelines for Adults and Adolescents 2013), and increased impact of potential co-infections, including tuberculosis, hepatitis C, and meningitis (Hua et al. 2013). These challenges can impact the psychological and physical well-being of people living with HIV.

Qualitative research has found that people diagnosed with HIV often report a shift in their perspective of the meaning of their lives or purpose after diagnosis (Coward 1994; Farber et al. 2003; Lyon and Younger 2001; Lewis et al. 2006; Schaefer and Coleman 1992; Bower et al. 1998). Reports of increased meaning in life post-diagnosis are common: active community outreach from HIV-support organizations, compassionate family members, caring clinical staff, and psychological support services can help those recently diagnosed to generate and associate positive meaning with their HIV infection (Bower et al. 1998; Lutz et al. 2011; Kremer and Ironson 2014). Others may feel their lives have lost meaning. An HIV diagnosis can limit the formation of intimate partnerships, discrimination or poor health can result in unemployment, and internalized stigma can lead to isolation and depression (Audet et al. 2013; Berger et al. 2001; Bunn et al. 2007).

The study of meaning-in-life

People have long sought to explore the meaning of human existence (Adler 1958; Frankl 1963; Reker and Cousins 1979; Steger et al. 2006). In an effort to transform seemingly random occurrences into culturally understandable ones, people seek to ascribe meaning to positive (educational attainment, occupational achievement) and negative (disease, accidents, or traumatic incidents) events (Kleinman 1988). Meaningfulness has been defined as “a fundamental sense of meaning, based on an appraisal of one’s life as coherent, significant, directed and belonging” ((Schnell 2009):487). Sources of meaning can include: leisure activities or hobbies, personal relationships, creative work, traditional and culture, legacy, and religion, among others (Reker and Wong 1988). These sources reflect human needs, including “purpose, understanding, responsible action, and enjoyment” (MacDonald et al. 2012). Feeling a strong meaning in life contributes to a healthy sense of coherence (S.O.C.), in which people believe: (1) that events in their lives are explicable and predictable; (2) they possess the resources to cope with difficult events; and (3) these events are worth investing time and energy to successfully manage (Antonovsky 1993). Those with a healthy S.O.C. are hypothesized to manage stress better than those who do not, potentially leading to improved coping behaviors and better health outcomes (Ironson and Kremer 2009; Kremer and Ironson 2014; Giglio et al. 2014; Gison et al. 2014; Geulayov et al. 2014). Being diagnosed with a fatal or serious chronic disease can heighten the need to attribute meaning to a person’s experience and can result in changes in identity, belief in a higher power, or perceived meaningfulness of life (Thorne 1999; Kremer and Ironson 2014; Lutz et al. 2011). If the diagnosis has a negative impact on a patient’s perception about the meaningfulness of their lives, it can be psychologically and physically damaging (Lyon and Younger 2001; Frankl 1963; Bower et al. 2003, Bower et al. 1998).

People who feel their lives have no meaning may cope with the trauma of a serious illness in maladaptaptive ways, including non-adherence to medication regimens and skipping medical appointments. They also may fail to disclose their health status to family and friends, shutting off opportunities for social support (Fife 1995). Previous studies of terminally or chronically ill patients have found associations between belief in the meaning of a person’s life and positive mental health outcomes (Weir et al. 1994; Farber et al. 2003; Fife 1995; Lyon and Younger 2001; Dezutter et al. 2014), self-care activities (Coward 1994), improved physical well-being (Farber et al. 2003; Bower et al. 2003, Bower et al. 1998; Dezutter et al. 2014), life satisfaction (Coward 1994), and mortality (Hill and Turiano 2014).

Meaning-in-life among people living with HIV

Three quantitative studies using Crumbaugh’s 20 item Purpose in Life (P.I.L.) survey (Crumbaugh 1968) have been conducted with HIV positive individuals in the United States (Bechtel 1994; Lyon and Younger 2001; Lewis et al. 2006). These studies, focused primarily on white, gay men, found that lower perceived purpose in life was more strongly correlated with depression than disease severity (Lyon and Younger 2001) and that HIV positive gay men had lower P.I.L. scores than gay men without HIV (Bechtel 1994). A more recent study found that overall meaning and purpose in life scores among those living with HIV increased over time; however P.I.L. scores among African Americans, those with lower income, and those with only high school education remain low (Lewis et al. 2006). Ironson and Kremer (2009) found psychological well-being and spirituality correlated strongly with the health (viral load, CD4 cell counts) and 5-year survival among people living with HIV.

Expressive Writing Interventions

Expressive writing therapy was developed by James Pennebaker (Pennebaker 1997) as a therapeutic process for people having difficulty coping with traumatic experiences. People are encouraged to write repeatedly about emotional experiences for at least four consecutive sessions. No feedback is provided by researchers or psychologists; participants are encouraged to reassess, identify, label, and understand distressing experiences through thinking and writing their own narrative (Pennebaker 2010) with the goal of improving psychological and/or physiological health outcomes. This intervention has been used with varying degrees of success with patients diagnosed with rectal cancer (Lepore et al. 2015), renal cell carcinoma (Milbury et al. 2014), Stargardt’s disease (Bryan and Lu 2014), anxiety (Park et al. 2014), depression (Krpan et al. 2013), and HIV disease (Ironson et al. 2013; Westling et al. 2007) among others.

The purpose of this article is to report on the correlates of a short, novel HIV-specific meaningfulness scale among PLHIV who participated in a randomized clinical trial of expressive writing while attending regularly scheduled appointments at an HIV clinic in Nashville, Tennessee. We expected that the patients with high scores on the HIV Meaningfulness Scale (HIVMS) should have greater perceptions of control over their disease and their lives, be more optimistic, have better mental health, and a higher quality of life.

Methods

Study procedures

This study was approved by the Vanderbilt University Institutional Review Board (IRB# 031107). Two randomized clinical trials of expressive writing were conducted, but in neither trial was a main effect found for the expressive writing condition. The first trial (Wagner et al. 2010) was a pilot study for the second trial, but the procedures were the same for both trials through the first post-intervention assessment. The results of the second trial have not been published. Baseline data and data from the first post-intervention for these two studies have been pooled for the secondary analyses presented in this paper.

Prior to beginning the study, participants completed the informed consent process. Participants provided information on demographics and completed self-report measures of psychological well-being and psychological coping resources (see below for descriptions of the individual measures). The measures were filled out at baseline in the clinic before participants began the expressive writing study and again 1-month after the fourth and final writing session. Each session lasted 20 minutes, with patients understanding that they would receive no feedback on their written narratives. Sessions were spaced approximately one week apart. The follow-up occurred approximately 7–8 weeks after the baseline assessment.

Subjects

One hundred and twenty five PLHIV were enrolled in one of two clinical trials examining the effects of expressive writing on positive and negative outcomes related to perceived psychosocial and health status among persons with HIV. These adults had a mean age of 41.7 years, were primarily male (73%), African American (61%) and had an income below $10,000 (71%). All were receiving care for HIV at the Comprehensive Care Center in Nashville, TN. Patients were randomized into either an expressive writing or a control writing condition. See Table 1 (Participant Characteristics at Baseline) for baseline descriptive characteristics of the combined study sample. Our sample was similar to the clinic population, with the exception of race (which was estimated to be 42% African American two years after the study period) (McGowan et al. 2011; Qian et al. 2011).
Table 1

Participant characteristics at baseline

Characteristic

Mean (SD)

Frequency (%)

Age

41.7 (2.0)

 

Male

 

91 (73)

Heterosexual

 

62 (49)

Race

  

African American

 

75 (61)

Caucasian

 

48 (39)

Employment status

  

Employed Full/Part Time

 

31 (25)

On Disability

 

34 (37)

Annual Income ≤ $10,000

 

88 (71)

Years with HIV

8.1 (5.6)

 

CD4 cell count1

432 (338)

 

Diagnosed with AIDS

 

40 (31)

Years with AIDS

2.3 (0.5)

 

Sexual Transmission

 

98 (80)

1CD4 cell counts were only available for 75 participants.

Measures

HIV Meaningfulness was measured with four items inspired by the meaning subscale of Antonovsky’s 13-item Sense of Coherence instrument (SOC-13) (Antonovsky 1993). Initially, we engaged experts in scale development and validation, HIV care and treatment, and psychologists working with terminally ill patients to identify appropriate measures. After that review we chose to rewrite questions similar to the S.O.C., but tailored for our population, because it has a well-established internal consistency (alphas of 0.82-0.95 in 16 studies) and has been shown to be stable over time (Antonovsky 1993). We adapted the content for an HIV+ population and reduced the number of items to facilitate administration of the scale to all patients at each clinical encounter. All of the items were worded positively and began with “As a patient with HIV Infection…” (See Table 2 for item wording) and were scored on a 7-point Likert scale. The HIVMS has a Cronbach’s alpha of 0.80, establishing its internal consistency reliability, and correlates 0.62 (n = 125; p < .001) with the 4-item meaning subscale of the SOC-13, establishing its concurrent validity as a measure of “sense of meaningfulness.” An exploratory principal components factor analysis showed that all four of the HIVMS items loaded significantly on a single component that explained 62.5% of the variance. (See Table 2 for factor loadings.)
Table 2

Baseline descriptive data for the HIVMS (n = 125)

 

Mean

SD

Factor loadings

As a patient with HIV Infection…

   

1. My life is full of interest.

5.47

1.78

.74

2. When I think about my life I very often feel how good it is to be alive.

5.84

1.81

.78

3. Doing the things I do every day is a source of deep pleasure and satisfaction.

4.94

1.89

.81

4. I anticipate that my personal life in the future will be full of meaning and purpose.

5.51

1.85

.83

SD = standard deviation.

An Index of Psychological Well-Being was constructed by subtracting the standardized (z) scores on the Perceived Stress Scale (Cohen et al. 1983) and the Negative Affect subscale of the Positive and Negative Affect Schedule (Watson et al. 1988) from the Positive Affect subscale of the PANAS. The higher the scores on this index, the greater the person’s psychological well-being. This index correlates -.92 (p < .001) with scores on the Center for Epidemiological Studies-Depression scale (Radloff 1977) administered to a subsample of these participants (n = 81), and .77 (p < .001) with the SOC-13 (Mukolo and Wallston 2012).

HIV-specific Quality of Life was measured by the total score on the MOS-HIV Scale (Wu et al. 1997). The MOS-HIV was modeled after the SF-36 (Stewart et al. 1988), a well-established measure of health-related quality of life that incorporates subdomains related to both physical and mental health.

The total number of HIV-related Signs and Symptoms was assessed by the revised Sign and Symptom Check-List for Persons Living with HIV/AIDS (SSC-HIV), a list of 73 physical signs and symptoms that characterize the condition (Holzemer et al. 2001).

Dispositional Optimism, the tendency to look on the bright side of things regardless of the situation, was assessed by the Life Orientation Test (LOT) (Scheier and Carver 1985). HIV-specific optimism was measured with a scale modeled after the LOT developed specifically for this study. These two measures of optimistic expectancies correlate .56 (p < .001) at baseline in this sample, providing evidence of the concurrent validity of the HIV-specific measure.

Generalized Self-Efficacy, the belief that the self is capable of doing whatever is necessary to bring about desired outcomes, was assessed by the Perceived Competence Scale.(Wallston 2001) HIV self-efficacy was measured by the Perceived HIV Self-Management Scale.(Wallston et al. 2011) As reported previously, these two measures of perceived control over one’s behavior correlate .69 (p < .001) at baseline in this sample, providing evidence of the concurrent validity of the PHIVSMS (Wallston et al. 2011).

Resilient Coping, the tendency to cope with stressors such as a chronic health condition in a highly adaptive manner, was assessed by the Brief Resilient Coping Scale (Sinclair and Wallston 2004).

An Index of Adherence to HIV Treatment was constructed by reviewing patients’ medical records for the 3-month period prior to their enrollment in the study and three months after the forth writing session for indications of failures to keep scheduled appointments and adhere to prescribed medications, if applicable. In addition, patients self-reported their age, sex, race, household income, number of years they have known they were HIV positive, and whether or not they had been diagnosed with AIDS.

Data analysis

Descriptive statistics for continuous measures are described with the mean and standard deviation. For those subject characteristics that are categorical in nature, percentages for each category were calculated. Spearman’s correlations (rhos) were used to estimate the bivariate associations between the HIVMS and the other psychological measures and demographic variables. Simple change scores from the pre-trial assessment to the 1-month post-writing follow-up assessment were calculated by subtracting the pre-trial score from the post-writing 1-month follow-up score. Dynamic correlations between change scores for the HIVMS and change scores for the other psychological measures were also estimated with Spearman’s rhos, for the total sample and separately for each experimental condition (expressive writing and neutral writing). Paired t-tests were used to see if HIVMS scores changed significantly from pre- to post-writing sessions for the total sample and for each of the two experimental conditions. Significance levels for each test were set at p < 0.05 and no adjustments were made for multiple comparisons.

Results

Among our participants the HIVMS had a mean score of 5.44 (out of seven) with a standard deviation of 1.45. Table 3 presents Spearman rhos for the baseline associations between HIV meaningfulness and the other psychological attributes assessed. As expected, there are strong positive correlations between HIV meaningfulness and measures of perceived control, optimism, and psychological well-being, and moderate correlations with overall HIV quality of life and resilient coping. These correlations support the convergent validity of the HIVMS.
Table 3

Baseline association of HIVMS with other constructs (n = 124)

 

rho

Index of Psychological Well-Being

.60***

HIV Quality of Life

.36***

Dispositional Optimism

.64***

HIV-specific Optimism

.51***

Generalized Self-efficacy

.62***

HIV-specific Self-efficacy

.51***

Resilient Coping

.27*

p < .05; ***p < .001.

As expected, the scores on the HIVMS are uncorrelated with any of the demographic and background characteristics of the study participants, with two exceptions: a weak, but significant, negative correlation with the index of non-adherence to HIV treatment (rho = −.19; p < .05) and a moderate negative correlation (rho = −.30, p = .001) with the number of HIV signs and symptoms.

Table 4 presents the dynamic correlations between changes in HIV meaningfulness and changes in the other psychological attributes assessed as well as changes in HIV symptoms over the roughly two month period between baseline and the one-month post-writing follow-up. All of the dynamic correlations were significant for the combined sample (ps < 0.01, except for generalized self-efficacy where p < 0.05). The moderately strong dynamic correlations for the total sample, however, were mainly due to the correlations of the change scores for the expressive writers (rhos ranged from 0.31 to 0.40), not for those assigned to write on non-emotional topics (rhos ranged from −0.06 to 0.29).
Table 4

Dynamic correlations (rhos) between changes in HIVMS and changes in other constructs for total sample and experimental groups separately

 

Total samplea

Expressive writersb

Neutral writersc

Index of Psychological Well-Being

.29**

.32**

.23

HIV Quality of Life

.27**

.31**

.22

Dispositional Optimism

.30**

.38**

.16

HIV-specific Optimism

.27**

.40**

.00

Generalized Self-efficacy

.19*

.32**

-.06

HIV-specific Self-efficacy

.29**

.32**

.23

Resilient Copingd

.33**

.33*

.29

**p < .01; *p < .05; an = 110; bn = 69; cn = 41; dn = 72, 50, and 22.

We also found that HIV meaningfulness scores did not differentially change over the two-month interval from baseline to the one-month post-writing follow-up (t(68) = 1.46, p = 0.15 for the expressive writers; t(41) = 0.76, p = 0.45 for the neutral writers). As a whole, those asked to express in writing their deepest thoughts and feelings about some stressful or traumatic event, including, perhaps, living with HIV, did not find any more meaning associated with being HIV positive than did those asked to write in a non-emotional manner about some trivial or unimportant topic. In fact, the HIVMS scores for both groups on average decreased two-tenths of a point from baseline (M = 5.52) to the one-month post-writing follow-up (M = 5.33; t(109) = 1.60, p =0.11).

Discussion

The primary aim of this analysis was to validate a novel HIV meaningfulness scale and explore correlations between this scale with patient adherence and HIV-related symptoms among participants enrolled in treatment at a clinic in Nashville, Tennessee. We also assessed the impact of an expressive writing intervention on HIVMS scores. HIVMS scores suggest the population enrolled in the study felt their lives were meaningful and were optimistic about the future. These scores may reflect the substantial financial and psychosocial support provided by the CCC and Nashville Cares, a local non-governmental organization (Nashville Cares 2014). We expected that patients with higher scores on the HIVMS would have greater perceptions of control over their disease and their lives, be more optimistic, have better mental health, and a higher quality of life. We found significant correlations between HIVMS scores and self-efficacy, coping, optimism, and quality of life, suggesting patients with higher HIV meaningfulness scores may have increased coping abilities which may lead to improved clinical outcomes (Farber et al. 2003; Bower et al. 2003, Bower et al. 1998).

As expected, scores on the HIVMS were not correlated with age, sex, income, work status, ethnicity, or sexual orientation. HIV meaning was negatively correlated with antiretroviral therapy non-adherence and with the number of HIV symptoms, suggesting that people who reported lower levels of meaningfulness in life were less likely to be adherent to their medication and more likely to have symptoms associated with their HIV disease. This association between meaning and adherence and number of HIV symptoms, is similar to that found in other studies (Cederfjall et al. 2002), providing further support for the integration of counseling and other mental health services for patients enrolled in HIV care.

The Cronbach’s alpha of 0.80 for the novel HIVMS in this study shows that this is a reliable (i.e., internally consistent) measure of meaningfulness in a population living with HIV (DeVellis 2003). The strong correlations with the four-item meaning subscale of the S.O.C. and the other psychological measures establishes its construct validity. Further evidence of construct validity is the dynamic correlation between the change in HIVMS and change in HIV optimism, control and well-being among expressive writing participants.

Contrary to our hypothesis, HIVMS scores among both control and intervention participants decreased on average two-tenths of a point at follow-up. In a similar study of women living with HIV, discovery of meaning in life increased among those exposed to an expressive writing intervention, and this increase was associated with increased adherence to medication (Westling et al. 2007). Similar studies on anger management among people suffering from chronic pain (Graham et al. 2008) and lupus or rheumatoid arthritis (Danoff-Burg et al. 2006) have yielded increased scores in life meaning and this increase has been correlated with health outcomes. However, others report that the process of expressive writing yields no increase in meaning-making, particularly among those who already have developed the necessary coping strategies in their everyday lives (Stroebe et al. 2006; Stroebe et al. 2005; Park 2010). Our study, focused primarily on men in treatment, may suggest that that expressive writing does not result in increased meaning in life among this population.

One of the strengths of this study is that, in addition to being able to look at static (i.e., cross-sectional) associations between our measure of HIV meaningfulness and other psychological constructs, we were also able to compute dynamic correlations between the change over time in HIV meaningfulness and change in those other constructs. As shown in Table 4, when looking at the total sample those dynamic correlations were all positive and significant, but, interestingly, the significant dynamic correlations between HIVMS and the other constructs were mostly evident among those in the expressive writing group, not among those assigned to the control writing group. A possible inference to be drawn from this is that some degree of cognitive-emotional restructuring took place among those assigned to do expressive writing that did not occur for those in the neutral writing condition. We can only speculate why the changes in HIVMS scores appeared to track the changes in the other measured psychological constructs for the expressive writers to a greater extent than is evident for the control group writers. One possibility is that the smaller size of the control group relative to the expressive writing group is why some of the correlations in the last column of Table 4 are not statistically significant, but this lack of power doesn’t account for the entire pattern of findings shown in the table. A much more intriguing hypothesis is that the clue to this puzzle lies in the actual narratives written by some of the expressive writers. We are, in fact, pursuing a qualitative analysis of the writings of those assigned to the experimental condition with the idea of linking what we learn from that study back to the changes in the quantitative measures described in this paper.

The results of this study support the use of a novel HIV meaningfulness scale to measure meaning in life among PLHIV. However, in addition to sample size there are several other limitations to acknowledge. In this study we only had pharmacy record data to act as a proxy for medication adherence, and number of HIV symptoms, and length of time since diagnosis was self-reported, potentially leading to misclassification due to social desirability or recall bias. Our population was primarily African American men with low socio-economic status, which may limit our generalizability to the general population. By only including participants that were part of a randomized controlled trial limits our ability to accurately measure test-retest reliability of the measure in the absence of a psychological intervention. Finally, this study did not assess the association of the HIVMS to long-term health outcomes, including morbidity or mortality.

Despite these limitations, using this short HIV-specific meaning scale among patients enrolled in care can have significant implications for health care delivery. Given strong correlations with measures of well-being and resilient coping, clinicians may find this scale allows them to identify patients who need additional psychological or psychosocial support to live positively with HIV. Because of the improvements in HIV treatment, PLHIV can live long and productive lives. The introduction of social support services among a subset of PLHIV who need additional assistance may improve adherence, reduce risky behaviors, and reduce internalized HIV stigma (Farber et al. 2013; Sikkema et al. 2010; Bottonari et al. 2010; Springer et al. 2012).

Conclusions

HIV meaningfulness is highly correlated with other measures of psychological well-being, namely sense of coherence, measures of control, optimism and well-being. Unlike a similar study with HIV-infected women, our expressive writing intervention was not associated with increasing HIV meaningfulness among our participants. Future research is necessary to determine the effect of HIV meaning on long-term health outcomes, including morbidity and mortality.

Declarations

Acknowledgments

The authors would like to thank the study participants and the clinicians at the Comprehensive Care Center in Nashville TN, and Takesia Richardson for assistance with data collection.

Funding

Collection of the data used in this study was overseen by LJW and supported by a National Institute for Mental Health grant (R21 MH65872) awarded to KAW. CMA is supported in part by Clinician and Translational Science Award (CTSA)/Vanderbilt Clinical &Translational Research Scholars (VCTRS) grant (2UL1TR000445). The contents of this manuscript are solely the responsibility of the authors and do not necessary represent the official views of the funding agencies.

Authors’ Affiliations

(1)
Department of Health Policy, Institute for Global Health, Vanderbilt University Medical Center
(2)
Nursing and Allied Health, Regents Online Campus Collaborative, Tennessee Board of Regents
(3)
School of Nursing, Vanderbilt University

References

  1. Adler, A. (1958). What life should mean to you (A Putnam Capricorn book CAP3). New York: Capricorn Books.Google Scholar
  2. Antonovsky, A. (1993). The structure and properties of the sense of coherence scale. Social Science & Medicine, 36(6), 725–733.View ArticleGoogle Scholar
  3. Audet, CM, McGowan, CC, Wallston, KA, & Kipp, AM. (2013). Relationship between HIV Stigma and Self-Isolation among People Living with HIV in Tennessee. PLoS One, 8(8), e69564. doi:10.1371/journal.pone.0069564.PubMedPubMed CentralView ArticleGoogle Scholar
  4. Bechtel, GA. (1994). Purpose in life among gay men with HIV disease. Nursing Connections, 7(4), 5–11.PubMedGoogle Scholar
  5. Berger, BE, Ferrans, CE, & Lashley, FR. (2001). Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. [Evaluation Studies Research Support, Non-U.S. Gov’t]. Research in Nursing & Health, 24(6), 518–529.View ArticleGoogle Scholar
  6. Bottonari, KA, Safren, SA, McQuaid, JR, Hsiao, CB, & Roberts, JE. (2010). A longitudinal investigation of the impact of life stress on HIV treatment adherence. Journal of Behavioral Medicine, 33(6), 486–495. doi:10.1007/s10865-010-9273-9.PubMedPubMed CentralView ArticleGoogle Scholar
  7. Bower, JE, Kemeny, ME, Taylor, SE, & Fahey, JL. (1998). Cognitive processing, discovery of meaning, CD4 decline, and AIDS-related mortality among bereaved HIV-seropositive men. Journal of Consulting and Clinical Psychology, 66(6), 979–986.PubMedView ArticleGoogle Scholar
  8. Bower, JE, Kemeny, ME, Taylor, SE, & Fahey, JL. (2003). Finding positive meaning and its association with natural killer cell cytotoxicity among participants in a bereavement-related disclosure intervention. Annals of Behavioral Medicine, 25(2), 146–155.PubMedView ArticleGoogle Scholar
  9. Bryan, J. L., Lu, Q. (2014). Vision for improvement: Expressive writing as an intervention for people with Stargardt's disease, a rare eye disease. J Health Psychol. doi:10.1177/1359105314536453.
  10. Bunn, JY, Solomon, SE, Miller, C, & Forehand, R. (2007). Measurement of stigma in people with HIV: a reexamination of the HIV Stigma Scale. [Research Support, N.I.H., Extramural]. AIDS Education and Prevention, 19(3), 198–208. doi:10.1521/aeap.2007.19.3.198.PubMedView ArticleGoogle Scholar
  11. Cederfjall, C, Langius-Eklof, A, Lidman, K, & Wredling, R. (2002). Self-reported adherence to antiretroviral treatment and degree of sense of coherence in a group of HIV-infected patients. AIDS Patient Care and STDs, 16(12), 609–616. doi:10.1089/108729102761882143.PubMedView ArticleGoogle Scholar
  12. Cohen, S, Kamarck, T, & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24(4), 385–396.PubMedView ArticleGoogle Scholar
  13. Coward, DD. (1994). Meaning and purpose in the lives of persons with AIDS. Public Health Nursing, 11(5), 331–336.PubMedView ArticleGoogle Scholar
  14. Crumbaugh, JC. (1968). Cross-validation of Purpose-in-Life test based on Frankl’s concepts. Journal of Individual Psychology, 24(1), 74–81.PubMedGoogle Scholar
  15. Danoff-Burg, S, Agee, JD, Romanoff, NR, Kremer, JM, & Strosberg, JM. (2006). Benefit finding and expressive writing in adults with lupus or rheumatoid arthritis. Psychology & Health, 21(5), 651–665. doi:10.1080/14768320500456996.View ArticleGoogle Scholar
  16. DeVellis, RF. (2003). Scale development : theory and applications (2nd ed., Applied social research methods series, Vol. 26). Thousand Oaks, Calif: Sage Publications, Inc.Google Scholar
  17. Dezutter, J., Luyckx, K., & Wachholtz, A. (2014). Meaning in life in chronic pain patients over time: associations with pain experience and psychological well-being. J Behav Med. doi:10.1007/s10865-014-9614-1.
  18. Fair, C, & Albright, J. (2012). “Don’t Tell Him You Have HIV Unless He’s ‘The One”: Romantic Relationships Among Adolescents and Young Adults with Perinatal HIV Infection. AIDS Patient Care and STDs, 26(12), 746–754. doi:10.1089/apc.2012.0290.PubMedView ArticleGoogle Scholar
  19. Farber, EW, Mirsalimi, H, Williams, KA, & McDaniel, JS. (2003). Meaning of illness and psychological adjustment to HIV/AIDS. Psychosomatics, 44(6), 485–491. doi:10.1176/appi.psy.44.6.485.PubMedView ArticleGoogle Scholar
  20. Farber, E. W., Shahane, A. A., Brown, J. L., & Campos, P. E. (2013). Perceived stigma reductions following participation in mental health services integrated within community-based HIV primary care. AIDS Care, doi:10.1080/09540121.2013.845285.
  21. Fife, BL. (1995). The measurement of meaning in illness. Social Science & Medicine, 40(8), 1021–1028.View ArticleGoogle Scholar
  22. Frankl, VE. (1963). Man’s search for meaning; an introduction to logotherapy. Boston: Beacon.Google Scholar
  23. Geulayov, G., Drory, Y., Novikov, I., & Dankner, R. (2014). Sense of coherence and 22-year all-cause mortality in adult men. J Psychosom Res. doi:10.1016/j.jpsychores.2014.12.010.
  24. Giglio, R. E., Rodriguez-Blazquez, C., de Pedro-Cuesta, J., & Forjaz, M. J. (2014). Sense of coherence and health of community-dwelling older adults in Spain. Int Psychogeriatr, 1–8, doi:10.1017/s1041610214002440.
  25. Gison, A, Rizza, F, Bonassi, S, Dall’Armi, V, Lisi, S, & Giaquinto, S. (2014). The sense-of-coherence predicts health-related quality of life and emotional distress but not disability in Parkinson’s disease. BMC Neurology, 14, 193. doi:10.1186/s12883-014-0193-0.PubMedPubMed CentralView ArticleGoogle Scholar
  26. Graham, J, Lobel, M, Glass, P, & Lokshina, I. (2008). Effects of written anger expression in chronic pain patients: making meaning from pain. Journal of Behavioral Medicine, 31(3), 201–212. doi:10.1007/s10865-008-9149-4.PubMedView ArticleGoogle Scholar
  27. Hill, PL, & Turiano, NA. (2014). Purpose in Life as a Predictor of Mortality Across Adulthood. Psychological Science, 25(7), 1482–1486. doi:10.1177/0956797614531799.PubMedPubMed CentralView ArticleGoogle Scholar
  28. Hogg, RS, Althoff, KN, Samji, H, Cescon, A, Modur, S, Buchacz, K, et al. (2013). Increases in life expectancy among treated HIV-positive individuals in the United States and Canada, 2000–2007. Paper presented at the International AIDS Society Conference on HIV Pathogenesis. Kuala Lumpur, Malaysia: Treatment and Prevention.Google Scholar
  29. Holzemer, WL, Hudson, A, Kirksey, KM, Hamilton, MJ, & Bakken, S. (2001). The revised Sign and Symptom Check-List for HIV (SSC-HIVrev). Journal of the Association of Nurses in AIDS Care, 12(5), 60–70.PubMedView ArticleGoogle Scholar
  30. Hua, L, Andersen, JW, Daar, ES, Glesby, MJ, Hollabaugh, K, & Tierney, C. (2013). HCV/HIV Co-infection and Responses to Initial Antiretroviral Treatment. AIDS (London, England), 27(17), 2725–2734. doi:10.1097/01.aids.0000432470.46379.dd.View ArticleGoogle Scholar
  31. Ironson, G, & Kremer, H. (2009). Spiritual transformation, psychological well-being, health, and survival in people with HIV. International Journal of Psychiatry in Medicine, 39(3), 263–281.PubMedView ArticleGoogle Scholar
  32. Ironson, G, O’Cleirigh, C, Leserman, J, Stuetzle, R, Fordiani, J, Fletcher, M, et al. (2013). Gender-specific effects of an augmented written emotional disclosure intervention on posttraumatic, depressive, and HIV-disease-related outcomes: a randomized, controlled trial. Journal of Consulting and Clinical Psychology, 81(2), 284–298. doi:10.1037/a0030814.PubMedView ArticleGoogle Scholar
  33. Kleinman, A. (1988). The illness narratives : suffering, healing, and the human condition. New York: Basic Books.Google Scholar
  34. Kremer, H, & Ironson, G. (2014). Longitudinal spiritual coping with trauma in people with HIV: implications for health care. AIDS Patient Care and STDs, 28(3), 144–154. doi:10.1089/apc.2013.0280.PubMedPubMed CentralView ArticleGoogle Scholar
  35. Krpan, KM, Kross, E, Berman, MG, Deldin, PJ, Askren, MK, & Jonides, J. (2013). An everyday activity as a treatment for depression: the benefits of expressive writing for people diagnosed with major depressive disorder. Journal of Affective Disorders, 150(3), 1148–1151. doi:10.1016/j.jad.2013.05.065.PubMedPubMed CentralView ArticleGoogle Scholar
  36. Lepore, SJ, Revenson, TA, Roberts, KJ, Pranikoff, JR, & Davey, A. (2015). Randomised controlled trial of expressive writing and quality of life in men and women treated for colon or rectal cancer. Psychology & Health, 30(3), 284–300. doi:10.1080/08870446.2014.971798.View ArticleGoogle Scholar
  37. Lewis, MP, Erlen, JA, Dabbs, AD, Breneman, K, & Cook, C. (2006). The utility of the Purpose-in-Life Test in persons with AIDS. Journal of the Association of Nurses in AIDS Care, 17(1), 51–59.PubMedView ArticleGoogle Scholar
  38. Lichtenstein, B, Laska, MK, & Clair, JM. (2002). Chronic sorrow in the HIV-positive patient: issues of race, gender, and social support. [Comparative Study Research Support, Non-U.S. Gov’t]. AIDS Patient Care and STDs, 16(1), 27–38. doi:10.1089/108729102753429370.PubMedView ArticleGoogle Scholar
  39. Loutfy, MR, Logie, CH, Zhang, Y, Blitz, SL, Margolese, SL, Tharao, WE, et al. (2012). Gender and ethnicity differences in HIV-related stigma experienced by people living with HIV in Ontario, Canada. [Research Support, Non-U.S. Gov’t]. PLoS One, 7(12), e48168. doi:10.1371/journal.pone.0048168.PubMedPubMed CentralView ArticleGoogle Scholar
  40. Lutz, F, Kremer, H, & Ironson, G. (2011). Being Diagnosed with HIV as a Trigger for Spiritual Transformation. Religions, 2, 398–409. doi:10.3390/rel2030398.View ArticleGoogle Scholar
  41. Lyon, DE, & Younger, JB. (2001). Purpose in life and depressive symptoms in persons living with HIV disease. Journal of Nursing Scholarship, 33(2), 129–133.PubMedView ArticleGoogle Scholar
  42. MacDonald, M, Wong, P, & Gingras, D. (2012). Meaning-in-Life Measures and Development of a Brief Verson of the personal Meaning Profile. In P Wong (Ed.), The Human Quest for Meaning: Theories, Research, and Applications. New York, NY: Routledge.Google Scholar
  43. McGowan, CC, Weinstein, DD, Samenow, CP, Stinnette, SE, Barkanic, G, Rebeiro, PF, et al. (2011). Drug use and receipt of highly active antiretroviral therapy among HIV-infected persons in two U.S. clinic cohorts. PLoS One, 6(4), e18462. doi:10.1371/journal.pone.0018462.PubMedPubMed CentralView ArticleGoogle Scholar
  44. Milbury, K, Spelman, A, Wood, C, Matin, SF, Tannir, N, Jonasch, E, et al. (2014). Randomized controlled trial of expressive writing for patients with renal cell carcinoma. Journal of Clinical Oncology, 32(7), 663–670. doi:10.1200/JCO.2013.50.3532.PubMedPubMed CentralView ArticleGoogle Scholar
  45. Mukolo, A, & Wallston, KA. (2012). The relationship between positive psychological attributes and psychological well-being in persons with HIV/AIDS. AIDS and Behavior, 16(8), 2374–2381. doi:10.1007/s10461-011-0029-5.PubMedView ArticleGoogle Scholar
  46. Nashville Cares (2014). www.nashvillecares.org. Accessed March 12 2014.
  47. Panel on Antiretroviral Guidelines for Adults and Adolescents (2013). Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. Available at http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf. Accessed September 20, 2014.
  48. Park, CL. (2010). Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136(2), 257–301. doi:10.1037/a0018301.PubMedView ArticleGoogle Scholar
  49. Park, D, Ramirez, G, & Beilock, SL. (2014). The role of expressive writing in math anxiety. Journal of Experimental Psychology: Applied, 20(2), 103–111. doi:10.1037/xap0000013.PubMedGoogle Scholar
  50. Pennebaker, JW. (1997). Writing about emotional experiences as a therapeutic process. Psychological Science, 8(3), 162–166.View ArticleGoogle Scholar
  51. Pennebaker, JW. (2010). Expressive Writing Therapy. In I Marks, L Sibilia, & S Borgo (Eds.), Common Language for Psychotherapy Procedures (p. 76). Rome, Italy: Books on Demand GmbH.Google Scholar
  52. Phillips, KD, Moneyham, L, Thomas, SP, Gunther, M, & Vyavaharkar, M. (2011). Social context of rural Women with HIV/AIDS. Issues in Mental Health Nursing, 32(6), 374–381. doi: 10.3109/01612840.2011.568273.PubMedView ArticleGoogle Scholar
  53. Qian, HZ, Stinnette, SE, Rebeiro, PF, Kipp, AM, Shepherd, BE, Samenow, CP, et al. (2011). The relationship between injection and noninjection drug use and HIV disease progression. Journal of Substance Abuse Treatment, 41(1), 14–20. doi: 10.1016/j.jsat.2011.01.007.PubMedPubMed CentralView ArticleGoogle Scholar
  54. Radloff, LS. (1977). The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.View ArticleGoogle Scholar
  55. Reker, G, & Cousins, J. (1979). Factor structure, construct validity and reliability of Seeking of Noetic Goals (SONG) and Purpose in Life (PIL) tests. Journal of Clinical Psychology, 34(1), 85–91.View ArticleGoogle Scholar
  56. Reker, G, & Wong, P. (1988). Aging as an individual process: Towards a theory of personal meaning. In J Birren & V Bengston (Eds.), Emergent theories of aging. New York, NY: Springer.Google Scholar
  57. Schaefer, S, & Coleman, E. (1992). Shifts in meaning, purpose, and values following a diagnosis of human immunodeficiency virus (HIV) among gay men. Special Issue: Sexual transmission of HIV infectionL Risk reduction, trauma, and adaptation. Journal of Psychology and Human Sexuality, 5(1–2), 13–29.Google Scholar
  58. Scheier, MF, & Carver, CS. (1985). Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychology, 4(3), 219–247.PubMedView ArticleGoogle Scholar
  59. Schnell, T. (2009). The Sources of Meaning and Meaning in Life Questionnaire (SoMe): relations to demographics and well-being. Journal of Positive Psychology, 4(6), 483–499.View ArticleGoogle Scholar
  60. Sikkema, KJ, Watt, MH, Drabkin, AS, Meade, CS, Hansen, NB, & Pence, BW. (2010). Mental health treatment to reduce HIV transmission risk behavior: a positive prevention model. AIDS and Behavior, 14(2), 252–262. doi:10.1007/s10461-009-9650-y.PubMedPubMed CentralView ArticleGoogle Scholar
  61. Sinclair, VG, & Wallston, KA. (2004). The development and psychometric evaluation of the Brief Resilient Coping Scale. Assessment, 11(1), 94–101.PubMedView ArticleGoogle Scholar
  62. Springer, SA, Dushaj, A, & Azar, MM. (2012). The impact of DSM-IV mental disorders on adherence to combination antiretroviral therapy among adult persons living with HIV/AIDS: a systematic review. AIDS and Behavior, 16(8), 2119–2143. doi:10.1007/s10461-012-0212-3.PubMedPubMed CentralView ArticleGoogle Scholar
  63. Steger, M, Frazier, P, & Oishi, SKM. (2006). The meaning in life questionnaire: assessing the presences of and search for meaning in life. Journal of Clinical Psychology, 53(1), 80–93.Google Scholar
  64. Stewart, AL, Hays, RD, & Ware, JE, Jr. (1988). The MOS short-form general health survey. Reliability and validity in a patient population. Medical Care, 26(7), 724–735.PubMedView ArticleGoogle Scholar
  65. Stroebe, W, Schut, H, & Stroebe, MS. (2005). Grief work, disclosure and counseling: do they help the bereaved? Clinical Psychology Review, 25(4), 395–414. doi:10.1016/j.cpr.2005.01.004.PubMedView ArticleGoogle Scholar
  66. Stroebe, M, Schut, H, & Stroebe, W. (2006). Who benefits from disclosure? Exploration of attachment style differences in the effects of expressing emotions. Clinical Psychology Review, 26(1), 66–85. doi: 10.1016/j.cpr.2005.06.009.PubMedView ArticleGoogle Scholar
  67. Thorne, SE. (1999). The science of meaning in chronic illness. International Journal of Nursing Studies, 36(5), 397–404.PubMedView ArticleGoogle Scholar
  68. Van Rie, A, Sengupta, S, Pungrassami, P, Balthip, Q, Choonuan, S, Kasetjaroen, Y, et al. (2008). Measuring stigma associated with tuberculosis and HIV/AIDS in southern Thailand: exploratory and confirmatory factor analyses of two new scales. [Evaluation Studies]. Tropical Medicine & International Health, 13(1), 21–30. doi:10.1111/j.1365-3156.2007.01971.x.View ArticleGoogle Scholar
  69. Wagner, LJ, Hilker, KA, Hepworth, JT, & Wallston, KA. (2010). Cognitive adaptability as a moderator of expressive writing effects in an HIV sample. AIDS and Behavior, 14, 410–420.PubMedView ArticleGoogle Scholar
  70. Wallston, KA. (2001). Conceptualization and operationalization of perceived control. In A. Baum, T. Revenson, & J. E. Singer, (Eds), The Handbook of Health Psychology (pp. 49–58). Mahwah, NJ: Erlbaum.
  71. Wallston, KA, Osborn, CY, Wagner, LJ, & Hilker, KA. (2011). The Perceived Medical Condition Self-Management Scale applied to persons with HIV/AIDS. Journal of Health Psychology, 16(1), 109–115. doi:10.1177/1359105310367832.PubMedView ArticleGoogle Scholar
  72. Watson, D, Clark, LA, & Tellegen, A. (1988). Development and validation of brief measures of positive and negative affect: the PANAS scales. Journal of Personality and Social Psychology, 54(6), 1063–1070.PubMedView ArticleGoogle Scholar
  73. Weir, R, Browne, G, Roberts, J, Tunks, E, & Gafni, A. (1994). The meaning of illness questionnaire: further evidence for its reliability and validity. Pain, 58(3), 377–386.PubMedView ArticleGoogle Scholar
  74. Westling, E, Garcia, K, & Mann, T. (2007). Discovery of meaning and adherence to medications in HIV-infected women. Journal of Health Psychology, 12(4), 627–635. doi:10.1177/1359105307078169.PubMedView ArticleGoogle Scholar
  75. Wu, AW, Revicki, DA, Jacobson, D, & Malitz, FE. (1997). Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Quality of Life Research, 6(6), 481–493.PubMedView ArticleGoogle Scholar

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