The Relationship Between Spirituality, Purpose in Life, and Well-Being in HIV-Positive Persons

The Relationship Between Spirituality, Purpose in Life, and Well-Being in HIV-Positive Persons Kathleen M. Litwinczuk, MSN, APRN, BC Carla J. Groh, PhD, APRN, BC

Research has shown that spirituality has a positive effect on mental and physical health; however, few studies have explored the influence of spirituality on purpose in life and well-being in persons living with HIV. This descriptive cross-sectional study was designed to examine the relationship between spirituality, purpose in life, and well-being in a sample of 46 HIV-positive men and women. Spirituality was measured using the Spiritual Involvement and Beliefs Scale–Revised (SIBS-R), purpose in life was measured using the Purpose in Life (PIL) test, and wellbeing was measured using the General Well-Being (GWB) Schedule. Demographic data on gender, age, length of time living with diagnosis of HIV/AIDS, employment status, and religious affiliation were also collected. Spirituality was reported to be significantly correlated with purpose in life (r ⫽ .295, p ⫽ .049) but not with well-being (r ⫽ .261, p ⫽ .084). Additionally, the SIBS-R, PIL, and GWB had alpha coefficients greater than .83, suggesting they are reliable and valid measures for this population of HIV-positive persons. The result that spirituality and purpose in life were significantly correlated offers the potential for designing nursing interventions and care delivery approaches that support psychological adaptation to HIV. Further studies with larger and more diverse samples are needed to better understand the role of well-being in healing.

to a chronic medical condition requiring ongoing management and monitoring. Learning to live with HIV/AIDS is a care management issue for nursing when one considers the mortality statistics. National surveillance data show a marked reduction in morbidity and mortality since 1996, when highly active antiretroviral therapy became the first-line treatment for those with HIV/AIDS. In the U.S. HIV Outpatient Study, Palella et al. (1998) reported that the death rate declined from 29.4 per 100 person-years in 1995 to 8.8 per 100 person-years in the second quarter of 1997 for those with advanced AIDS. At the end of 2003, an estimated 1,039,000 to 1,185,000 persons in the United States were living with HIV/AIDS (Centers for Disease Control and Prevention [CDC], 2005). In the role of coordinating and managing primary care for people who are living longer with HIV, nurses need to be knowledgeable about the medical management of HIV and able to provide care aimed at helping long-term survivors cope with a terminal illness. Persons who are HIV-positive have been the subject of a substantial body of research. Although the vast majority of these studies have revolved around the medical management of HIV (Murphy, Lu, Martin, Hoffman, & Marelich, 2002; Nicholas et al., 2002; Parikh, Cheng, Nieman, & Grimes, 2003; Schrimshaw, Siegel & Lekas, 2005), studies in more

Key words: HIV, spirituality, purpose in life, wellbeing

Kathleen M. Litwinczuk, MSN, APRN, BC, is the inpatient surgical coordinator at Veteran’s Administration. Carla J. Groh, PhD, APRN, BC, is an associate professor at McAuley School of Nursing, University of Detroit Mercy.

Over the years, the management of those infected with HIV has changed from an acute terminal illness

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 13-22 doi:10.1016/j.jana.2007.03.004 Copyright © 2007 Association of Nurses in AIDS Care

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recent years have attempted to examine the psychological adjustment and coping resources used by people living with HIV/AIDS (Sikkema et al., 2000; Stein & Rotheram-Borus, 2004; Turner-Cobb et al., 2002). This study focuses on three concepts related to coping with a chronic illness: spirituality, purpose in life, and well-being.

Research Related to Spirituality A significant number of research studies suggest that religion/spirituality is associated with psychological adjustment and effective coping for persons living with HIV/AIDS. Siegel and Schrimshaw (2002) examined the perceived benefits of religious and spiritual coping by interviewing 63 older HIVinfected adults. Participants in this qualitative study reported a variety of benefits from their religious and spiritual beliefs and practices. However, these benefits did not seem to be related to specific beliefs or practices; rather, many different spiritual and religious practices and divergent beliefs provided similar benefits for participants. Nine perceived benefits were identified: (a) evocation of comforting emotions and feelings; (b) strength, empowerment, and control; (c) easing of the emotional burden of the illness; (d) social support and a sense of belonging; (e) spiritual support through a personal relationship with God; (f) creation of meaning and acceptance of the illness; (g) help in preserving health; (h) relief of fear and uncertainty related to death; and (i) self-acceptance and reduction of self-blame. The authors concluded that these perceived benefits potentially offer means by which religion’s spirituality may affect psychological adjustment. A study of 184 mostly African American women living with HIV examined the role of spiritual activities (e.g., spiritual beliefs and manifestations of those beliefs) as a resource that might reduce the negative effects of disease-related stressors on adaptational outcomes (Sowell et al., 2000). Results indicate that as spiritual activities increased emotional distress decreased, even when adjustments were made for HIVrelated stressors. Sowell et al. (2000) concluded that spirituality may function as a stress-resistance resource. Further support for the psychological benefits of spirituality is gained from a study of 117 African American

men and women living with HIV/AIDS (Coleman, 2003). This descriptive cross-sectional study was designed to examine the relationships among spirituality, sexual orientation, mental well-being, and aspects of functional health status. Spirituality was measured using the Spiritual Well Being (SWB) Scale and the Medical Outcomes Study Questionnaire-30, which assesses aspects of functional health status and mental well-being. The results indicated that spirituality contributed significantly to mental well-being and functional health status and was inversely related to HIV symptoms. Research Related to Spirituality and Purpose in Life In one of the first studies to examine the meaning and purpose in life for those living with HIV/AIDS, Carson and Green (1992) examined the relationship between spiritual well-being and hardiness in a group of 100 people who were either HIV-positive or had a diagnosis of AIDS. Their study was based on the work of Viktor Frankl, who believed that spiritual health led to psychological hardiness. The SWB Scale was used to measure spiritual well-being and its components: religious and existential well-being. Hardiness was measured using the Personal Views Survey (PVS). The authors proposed that meaning is reported in both the SWB Scale and the PVS. A significant relationship between spiritual well-being and hardiness (multiple R ⫽ .4165; p ⬍ .001) as well as between the existential component of spiritual well-being and hardiness (R ⫽ .5047; p ⬍ .001) was reported. Carson and Green (1992) concluded that persons who were spiritually well and who found meaning and purpose in their lives were also hardier. A qualitative study conducted by Fryback and Reinert (1999) examined the concept of spirituality from the perspective of people living with a potentially terminal diagnosis. A convenience sample of 10 women with cancer and 5 men with HIV/AIDS was interviewed. The results suggested that spirituality was an essential component to sense of health and well-being. Many of the subjects viewed spirituality as a bridge between hopelessness and meaningfulness in life. Furthermore, those who had found meaning in their disease thought they had a better

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quality of life now than they had before the diagnosis. Research Related to Spirituality and Well-being A study conducted by Somlai and Heckman (2000) investigated the multidimensional characteristics of spirituality and their relationships with factors associated with the quality of life, well-being, and emotional adjustment of 275 people living with HIV/AIDS. The instruments used included the Spirituality and Religion Survey, Functional Assessment of HIV Infection Scale, Revised University of California at Los Angeles Loneliness Scale, Provision of Social Relations Scale, Coping Responses to HIV/ AIDS Scale, Satisfaction with Life Scale, demographic characteristics of the subjects, and questions related to their sexual behavior. The results suggested that subjects who scored higher on spirituality were also more likely to develop problem-solving strategies and to report greater satisfaction with their lives. A study by Reker, Peacock, and Wong (1987) examined the relationship between purpose in life and wellbeing from a life-span perspective. Although the subjects were not persons living with HIV/AIDS, the study has relevance for this population. A total of 300 men and women ranging through five developmental stages from young adulthood to the old-old completed two surveys. The Life Attitude Profile (LAP) is a 46-item seven-point Likert scale consisting of seven factorially derived dimensions: Life Purpose, Existential Vacuum, Life Control, Death Acceptance, Will to Meaning, Goal Seeking, and Future Meaning. The second survey was the Perceived Well-Being Scale, a 14-item seven-point Likert scale of psychological and physical well-being. Six of the seven LAP dimensions were significantly associated with perceived well-being. Purpose in life was associated with positive feelings of mental and physical health; lack of meaning and purpose predicted perceived psychological and physical discomforts. Furthermore, Reker et al. (1987) reported that purpose in life increased as age of subjects increased. There is mounting evidence based on the review of literature to suggest that spirituality acts as a coping resource for many people living with HIV/ AIDS. Moreover, spirituality has been correlated with purpose in life (Carson & Green, 1992; Fryback

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& Reinert, 1999) and with well-being (Somlai & Heckman, 2000). However, the authors could find no studies to date that examined the relationship among these three concepts within the same study. As a result, the authors designed a study to investigate the relationships between spirituality, purpose in life, and well-being of people living with HIV/AIDS. It was hypothesized that spirituality would be significantly and positively correlated with purpose in life and well-being in people living with HIV. This study was guided by the theoretical models of Viktor Frankl and results from past studies on spirituality, purpose in life, and well-being. Frankl (1962, 1967, 1969) proposed that the primary force driving all human beings is the desire to find purpose in life, and that purpose is specific to the individual and arises from the circumstances of that person’s immediate life. Results from the present study can be used to develop nursing interventions that incorporate spirituality as a way of enhancing purpose in life and well-being for people living with HIV/AIDS.

Methods Participants The sample consisted of 46 HIV-seropositive men (n ⫽ 40) and women (n ⫽ 6) who were recruited from several community-based HIV/AIDS organizations. These community groups typically meet weekly for education and mutual support. Subjects qualifying for participation met four inclusion criteria: HIV-positive diagnosis for more than 6 months, participation in one of the HIV-related community organizations, age at least 18 years, and ability to speak and understand English. Before participation, each subject signed a consent form approved by the internal review board at the university. Design and Procedure A descriptive cross-sectional study was conducted to examine the relationships between spirituality, purpose in life, and well-being in a group of HIV-positive men and women living in a large urban city in the American Midwest. The investigator approached the leader of the community groups requesting permission to explain the

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research project at one of the community group meetings. Once permission was granted, the investigator attended the community meeting, explained the purpose of the study, and answered questions. Those interested in participating signed the informed consent and were given a copy of the survey. Participants could either complete the survey at that point or take the survey home and complete it there. The survey took approximately 45 minutes to complete. A preaddressed stamped envelope was provided to those who preferred completing the survey at home. Instruments Spirituality. Spirituality was measured using the Spiritual Involvement and Beliefs Scale–Revised (SIBS-R) (Hatch, Burg, Naberhaus, & Hellmich, 1998; R.L. Hatch, H. Spring, L. Ritz, & M. A. Burg, personal communication, February 5, 2005). This scale includes a range of varying religious and spiritual perspectives. Spirituality is defined by such qualities as belief in a higher power, purpose, faith, prayer, trust in providence, group worship, meditation, ability to find meaning in suffering, ability to forgive, and gratitude for life. The SIBS-R contains 22 items, and response options range from 7 (strongly agree) to 1 (strongly disagree). Scores range from a low of 22 to a high of 154, with higher scores indicating greater level of spiritual belief and practice. Alpha coefficients of .91 and .92 for the revised 22-item scale have been reported (Burkhardt, 2002; Boscaglia, Clarke, Jobling, & Quinn, 2005), and test-retest reliability was reported to be high at .92 (Burkhardt, 2002). The Cronbach’s alpha for this study was .83. Purpose in life. The Purpose in Life (PIL) test is an attitude scale constructed by Crumbaugh and Maholick (1964, 1981), which measures the degree to which an individual experiences a sense of meaning and purpose in life. The PIL is based on Viktor Frankl’s concept concerning the neurosis that develops with a lack of perceived meaning in life. Frankl’s theory purported that if an individual can find meaning in his or her life, that person then can endure all manner of suffering. He called this inner strength spirituality. For this reason, the PIL was deemed an

appropriate instrument. The 20 items on the PIL are scored on a seven-point scale ranging from 1 (feelings of no purpose) to 7 (the greatest feelings of purpose in life). Scores range from a low of 20 to a high of 140, with higher scores indicating a greater sense of purpose. The split-half (odd-even) correlation of the PIL yielded a coefficient of .85, corrected by the Spearman-Brown formula to .92 (Crumbaugh, 1968). The Cronbach’s alpha for this study was .93. Well-being. Sense of well-being was assessed using the General Well Being (GWB) Schedule (Dupuy, 1984). The GWB Schedule is a self-report inventory designed to measure an individual’s mental health and/or quality of life. The GWB Schedule includes 22 items that are combined to produce a general indicator of well-being and six subscales measuring hypothesized dimensions of well-being such as anxiety, depression, positive well-being, selfcontrol, general health, and vitality. All of the items use the month before the survey date as the time frame of interest. A total score could range from 0 to 110, with higher scores representing a greater sense of well-being. Proposed cutoffs representing three level of distress are 0 to 60 (severe distress), 61 to 72 (moderate distress), and 73 to 110 (positive well-being). The GWB Schedule was developed in the mid1970s for the U.S. Health and Nutrition Examination Survey I (HANES), with alpha coefficients of .90 to .94 and test-retests of .68 and .85 reported (Dupuy, 1984). More recent research has reported a Cronbach’s alpha of .89 in a sample of 88 diabetic American Indians (Leonardson et al., 2003) and .92 in a sample of 599 African American women (Taylor et al., 2003). The Cronbach’s alpha was .91 in this study. Demographics. Participants were asked to provide select demographic information: gender, age, length of time since diagnosis with HIV, religious affiliation, and employment status. Data Analysis Descriptive statistics including medians, means, and standard deviations were used to describe the sample. Independent t-tests (two-tailed) were used to

Litwinczuk, Groh / Spirituality, Well-Being, and Purpose in Life Table 1.

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Means and Standard Deviations for Well-being, Purpose in Life, and Spirituality, by Gender Variable

Aggregate Mean (SD)

Men (n ⴝ 40) Mean (SD)

Women (n ⴝ 6) Mean (SD)

p-value

Spiritual Involvement and Beliefs Scale–Revised Purpose in Life Psychological General Well Being Scale

116.8 (⫾ 17.4) 100 (⫾ 23) 67.4 (⫾ 18.6)

117.2 (⫾ 16.3) 99.7 (⫾ 22.8) 68.3 (⫾ 19.1)

114.5 (⫾ 25.3) 101.8 (⫾ 26.5) 61.5 (⫾ 15.2)

.723 .841 .412

identify differences by gender in the variables of interest. Pearson’s correlation was used to assess for relationships among the study variables. SPSS version 11.0 (SPSS Inc., Chicago) was used for the statistical analysis. An alpha of .05 was set a priori to identify statistical significance.

Results The demographic characteristics of the participants were similar to those of other HIV-positive people in large urban cities. The majority were African American, with men accounting for 87% (n ⫽ 40) of the participants. A total of 75% were between 30 and 50 years old (M ⫽ 40, SD ⫽ 9.4); 59% reported being unemployed. The majority (63%) reported HIV-positive diagnosis of more than 5 years. Additionally, almost half reported being Baptist, followed by other religious affiliation (22%), no religious affiliation (13%), Roman Catholic (11%), and other Protestant affiliation (4%). An independent t-test was used to determine differences by gender in the variables of interest. Because there were no statistically significant differences between men and women on spirituality, purpose in life, or well-being, data from all subjects were included in the analyses (N ⫽ 46). Instruments The SIBS-R (see Table 1) yielded a mean score of 116.8 (SD ⫽ 17.4), with scores ranging from 74 to 149. The PIL test (see Table 1) yielded a mean score of 100 (SD ⫽ 23), with scores ranging from 58 to 140. The responses on the Psychological Well Being Schedule (see Table 1) yielded a mean of 67.4 (SD ⫽

18.7), with scores ranging from 34 to 108. A mean of 67.4 indicates moderate distress. Group Differences To evaluate whether length of time since diagnosis influenced scores on the three study variables, participants were divided into two groups: those diagnosed with HIV for more than 10 years (n ⫽ 15) and those diagnosed with HIV for less than 10 years (n ⫽ 31). An independent-sample t-test comparing mean scores on spirituality, purpose in life, and well-being in both groups was run. No significant differences were reported between the groups on spirituality (t of ⫺.101, df ⫽ 43, p ⫽ .92) or purpose in life (t of ⫺1.54, df ⫽ 43, p ⫽.131). There was, however, a significant difference between the groups on wellbeing (t of ⫺2.26, df ⫽ 44, p ⫽ .029). Correlations A Pearson product correlation coefficient was computed to test the hypothesis that spirituality would be significantly and positively correlated with purpose in life and well-being in people living with HIV. Spirituality was significantly correlated with purpose in life (r ⫽ .295, p⫽ .049) but not with general well-being (r ⫽ .261, p ⫽ .084).

Discussion The relationships among spirituality, purpose in life, and general well-being in HIV-positive persons were described in this study. The hypothesis that spirituality would be significantly and positively correlated with purpose in life and well-being in people living with HIV was partially supported. The relationship between spirituality and purpose in life was

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significantly and positively correlated as expected (p ⫽ .049); however, the relationship between spirituality and well-being was not (p ⫽ .084). Spirituality and Purpose in Life The significant relationship reported between spirituality and purpose in life is consistent with other research studies with persons who are HIV-positive. Carson and Green (1992) concluded that persons who were spiritually well and who were able to find meaning and purpose in their lives were hardier, whereas Fryback and Reinert (1999) reported that subjects in their qualitative study viewed spirituality as the bridge between hopelessness and meaningfulness in life. The results also lend support to Frankl’s theory of “will to meaning” (Frankl, 1962, 1969). Frankl (1962) proposed that life does not have meaning, or a purpose, in and of itself; rather, purpose in life is specific to an individual and comes from the circumstances of that person’s immediate life. Certainly, persons living with HIV are faced with a fatal diagnosis and must integrate this information into their sense of self and their world view. It could be said that purpose in life is not a given but must be constructed. Spiritual beliefs are one way of constructing meaning. The uncertain and long-term character of HIV can lead to alterations in how a person perceives his or her purpose and meaning in life once that life is threatened. Frankl (1962) also implies that meaning (or purpose) in life may be age-related (i.e., as age increases, so does sense of purpose in life), although in this study, age was not significantly related to purpose in life (R ⫽ ⫺.027, p ⫽ .864). This result is contrary to those of Reker et al. (1987), who did report significant age differences on life purpose (p ⬍ .01) in a study of 300 subjects. Three possible explanations may account for the lack of age-related changes. First, the mean age of this sample was 40, with a relatively narrow dispersion of ages (SD ⫽ 9.46). Had the sample been larger and with a greater range of ages, age-related changes similar to those of Reker et al. who had a larger sample (N ⫽ 300) and greater age range (16 to 75⫹) might have been detected. Second, the sample in the Reker et al. study was recruited through public advertisements from the community, and subjects were relatively healthy.

Thus, the subjects in that study were more likely dealing with more normal life events compared with this study’s HIV-positive subjects who were dealing with life changes in many unexpected ways. Last, Reker at al. used the Life Purpose subscale (9 items) of the Life Attitude Profile (46 items) rather than the PIL to measure purpose in life. As such, the two instruments may be measuring different dimensions of purpose in life. Although to the authors’ knowledge neither the SIBS-R nor the PIL have been used in studies with HIV-positive persons, the mean and alpha coefficients obtained in this study do suggest these are valid and reliable instruments for this population. The mean obtained in this study on the SIBS-R (N ⫽ 46) was 116.8 (SD ⫽ 17.4), which was comparable to the mean of a pooled group of medical students (N ⫽ 304), nurses (N ⫽ 150), and elderly (N ⫽ 444) of 113.1 (SD ⫽ 20.9); a sample of recovering alcoholics (M ⫽ 124.8; N ⫽ 168); and adolescents (M ⫽ 100; N ⫽ 25) in pilot testing of the SIBS-R (Hatch, Spring, Ritz, & Burg, 2001). A more recent study of 100 women diagnosed with gynecological cancer reported a mean of 100.6 (SD ⫽ 27.1) (Boscaglia et al., 2005). Although the alpha coefficient of .83 in this study was lower than the reported alpha of .92 (Hatch et al., personal communication, February 5, 2005), coefficients of .80 or greater are highly desirable (Polit & Beck, 2004). Additionally, the mean for the PIL (N ⫽ 46) in this study was 100 (SD ⫽ 23), slightly lower than that obtained with a normed sample of 805 (M ⫽ 112.4, SD ⫽ 14.07) (Crumbaugh, 1968). Spirituality and Well-Being The result that spirituality and well-being were not significantly correlated was surprising (p ⫽ .089) and contrary to Somlai and Heckman’s (2000) result that people living with HIV who scored higher on spirituality were more likely to report greater satisfaction with life (e.g., well-being). One possible reason for the inconsistent results is that Somlai and Heckman (2000) conceptualized well-being as perceived social support, quality of life, and coping and adjustment efforts, whereas the GWB Schedule used in this study conceptualized the dimensions of well-being to

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include anxiety, depression, positive well-being, selfcontrol, general health, and vitality. Another possible explanation is that length of time since diagnosis of HIV may act as a moderating variable such that the relationship between spirituality and well-being is stronger or weaker for different values of time since diagnosis with HIV. To determine if length of time acts as a moderating variable, an independent sample t-test comparing the GWB mean between those diagnosed with HIV 10 years or more (N ⫽ 15) and those diagnosed less than 10 years (N ⫽ 31) was computed. Those diagnosed 10 years or more had a higher mean on the GWB Schedule compared with those diagnosed less than 10 years (76 vs. 63, respectively), and this difference was indeed statistically significant (t of ⫺2.26, df ⫽ 44, p ⫽ .029). Additionally, a greater number of subjects diagnosed with HIV for 10 years or more scored in the positive well-being level compared with subjects diagnosed for less than 10 years. For example, 10 of the 15 subjects diagnosed 10 years or more scored in the positive well-being level (66%) compared with 10 of the 31 subjects diagnosed less than 10 years (32%). An analysis of variance was computed comparing mean scores of the three levels of distress (severe distress, moderate distress, positive well-being) and spirituality. Although those in the positive well-being group had the highest mean on spirituality (M ⫽ 120, SD ⫽ 17.8) compared with moderate distress (M ⫽ 117, SD ⫽ 14.4) and severe distress (M ⫽ 112, SD ⫽ 8.4), the three groups did not differ significantly on reported spirituality (p ⫽ .397). Based on these results, length of time living with HIV does seem to moderate well-being (the older the diagnosis, the greater reported well-being) and level of distress (the older the diagnosis, the greater likelihood of positive well-being). However, length of time since HIV diagnosis did not seem to moderate the relationship between spirituality and well-being in this study. Two additional results of this study merit discussion. There was a significant correlation between purpose in life and well-being (r ⫽ .797, p ⫽ .000). This is consistent with the results of Viktor Frankl (1962, 1967, 1969), who hypothesized that suffering in and of itself may be the catalyst for spiritual enlightenment and growth. In reference to the effect of war on neurotic or even suicidal persons, the

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number of suicides actually decreases in times of war. Frankl’s explanation for this odd fact included the use the allegory of a building: “The best way to buttress and strengthen a dilapidated building is to increase the load it has to carry . . . those who contended with great suffering, yet under the pressure of circumstances, were also able to do their utmost, and to give their best” (Frankl, 1967, p. 116). In his opinion, suffering imposes enough of a burden to cause a person to evaluate the meaning of his or her life, which Frankl believes is a human being’s primary quest. He calls this quest a “will to meaning: a deep seated striving and struggling for a higher and ultimate meaning to his existence” (Frankl, 1967, p. 122). Thus, the relationship over time between purpose in life and a positive sense of well-being in those suffering with HIV infection is consistent with Frankl’s theory of the tendency of suffering to cause the individual to reassess and define personal meaning. He maintains that “it is precisely when facing such a fate, when being confronted with a hopeless situation, that man is given a last opportunity to fulfill a meaning—to realize even the highest value, to fulfill even the deepest meaning—and that is the meaning of suffering” (Frankl, 1967, pp. 14-15). This belief is supported in a study by Thompson, Coker, Krause, and Henry (2003), who reported that purpose in life was a powerful predictor of adjustment after spinal cord injury. Perhaps, then, it is the long-term reality of living with a life-threatening infection or a disease that promotes the process of assigning personal meaning that in turn gives a sense of enhanced general well-being and a redefinition of health. The second area for further discussion is the low percentage of female participants in this study, given the current demographics. According to the CDC, women constitute the fastest growing segment of the population diagnosed with HIV/AIDS. In 2003, females represented 26.6% of all new cases diagnosed in the United States: 11,498 of 43,112 new cases (CDC, 2005). In Michigan where this study was conducted, women represent 25% of all persons living with HIV (Michigan Department of Community Health, 2004). Yet women represented only 13% of the sample in this study. It is possible that women who are HIV positive do not use community-based HIV/AIDS organizations (where subjects in this study were recruited) to the same extent as men.

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Although there is some empirical evidence suggesting that women are reluctant to seek help, the studies conducted in this area have focused on medical careseeking and self-care activities. For example, in a study by Sowell et al. (1996), their sample of 46 HIV-positive women identified eight categories of perceived barriers to care related to the women’s experiences with health care providers. An earlier qualitative study by the same researchers explored self-care activities undertaken by women with HIV to promote and maintain their health. Seven categories of self-care activities were identified by the 27 respondents: special dietary and nutritional practices, choice not to use medically prescribed therapies, spiritual reliance and rituals, maintenance of physical activity, cognitive strategies, self-education, and adaptation of healthy lifestyles (Sowell et al., 1997). To the authors’ knowledge, there are no studies that have looked at where and when women seek help (social, spiritual, medical) and whether communitybased HIV/AIDS organizations are regarded as a source of support for HIV-positive women to the same extent as they are for men.

Limitations There are several limitations of this study. One is the multiplicity of spiritualities and that the SIBS-R may not be reflective of spirituality for some people. Further, spirituality is not synonymous with psychological adjustment and coping but rather is a person’s attempt to understand and connect with the transcendent. In efforts to better understand spirituality in HIV-positive persons, the authors may have diluted the significance of spirituality. The study is also limited because of results that rely on correlational relationship. Causal relationships between spirituality, purpose in life, and well-being cannot be determined from a cross-sectional study. Larger samples will be needed to investigate potential relationships between spirituality and the constructs of purpose in life and well-being. Another limitation is that the sample was recruited specifically from AIDS service organizations in a geographically limited area in an urban location in the American Midwest. These results may not be applicable to HIV-positive persons who live in rural

or suburban areas or those who do not use the services of structured AIDS organizations. Additionally, there was limited ethnic diversity in the sample (majority African American) and few women (13%). These limitations are characteristic of the convenience sampling used in this study. The self-report format of the study has limitations as well. It is difficult to know whether the subjects reported their actual feelings and beliefs or whether in some cases their responses reflected their desire to be viewed more favorably by the researchers. Furthermore, the literacy level of the instruments may have been higher than the literacy ability of some of the subjects. Last, inadequate information was collected in important areas. For example, information on church attendance or religious activities and differences in these activities post-HIV diagnosis was not asked for, which might have added to the authors’ understanding of spirituality. Additionally, questions related to changes in social support and comorbidities post-HIV diagnosis might have helped in the interpretation of the data. Nursing Implications Despite these limitations, the results of this study have several implications for practicing nurses. First, the result that spirituality is positively and significantly correlated with purpose in life offers the potential for designing nursing interventions and care delivery approaches that support psychological and spiritual adaptation to HIV disease. Second, the results of this study support the importance of spirituality in nursing and its role in healing, which has long been of interest to nurses (Burkhardt, 1989; McEwan, 2004; O’Neill & Kenny, 1998). Third, HIV-positive persons need time to redefine themselves, to find meaning in their life, and to develop a sense of well-being. Learning to live with a chronic, possibly fatal disease is a process rather than an end point. Fourth, the instruments used to measure spirituality, purpose in life, and well-being are psychometrically valid and reliable for this population. Finally, further studies addressing the relationship between spirituality, purpose in life, and well-being in HIV-positive women are needed.

Litwinczuk, Groh / Spirituality, Well-Being, and Purpose in Life

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