Although survival has been greatly enhanced with the advent of antiretroviral therapy, learning that one is diagnosed with AIDS continues to be a traumatic event. Researchers have shown that facing a traumatic life event creates an opportunity for people to discover meaning and strength (Hall, 1998; Steeves & Kahn, 1987). A diagnosis of AIDS prompts individuals to raise questions pertaining to the purpose and meaning of their lives and the nature of their suffering (Mellors, Erlen, Coontz, & Lucke, 2001; Schaefer & Coleman, 1992), and to make life adjustments to accept the uncertain long-term outcomes of their illness (Mellors et al., 2001).
The work of Frankl (1963) provided the theoretical framework for this study. Frankl purports that the strongest motivation for living is the “will to meaning,” or the search to find meaning for human existence. Life never ceases to have meaning because individuals always have the opportunity to choose the manner in which they face adversity. Individuals with a strong sense of purpose in life have goals and a sense of direction, feel there is meaning to their lives, hold beliefs that give life purpose, and have aims and objectives for living. According to Frankl, an individual who fails to find meaning and purpose that gives one's life a unique sense of identity experiences a state of emptiness and potential psychiatric complications.
Only minimal attention has been directed toward examining existential responses in persons with a chronic or fatal illness. Researchers have examined the concept of discovering purpose in life among individuals who are aging (Reker, Peacock, & Wong, 1987) and who have cancer (Block, 2001; Steeves & Kahn, 1987; Taylor, 1993). In these studies, the discovery of purpose in life was consistently related to positive mental health outcomes, well-being, and life satisfaction.
Likewise, few studies have been published that have explored meaning and purpose in life in persons with AIDS (PWA). The majority of these studies used a qualitative approach, arguing that purpose in life was a concept that was difficult to quantify and/or operationalize (Coward, 1994; Lyon & Younger, 2001; Mellors et al., 2001; Schaefer & Coleman, 1992; Schwartzberg, 2004).
Results from previous qualitative investigations of purpose in life among HIV-positive gay men revealed themes such as ascribing meaning to illness that was influenced by culture and personal factors and discovering beneficial aspects of coping with severe illness (Schwartzberg, 2004). Coward (1994) found that individuals reached out toward a broader life perspective of what was important to them and the achievement of new goals, resulting in increased connectedness and a sense of mental well-being. Schaefer and Coleman (1992) examined the shift in meaning and purpose that took place after a diagnosis of HIV among gay men. The majority of the participants reported that their overall sense of meaning, purpose, and value had changed since being diagnosed seropositive. PWA reported experiencing personal growth (Hall, 1998) and a positive shift in their overall sense of meaning and purpose, including sharing and helping others (Coward, 1994; Mellors et al., 2001), forming supportive relationships, and achieving a sense of spiritual well-being (Coward, 1994).
Only two published quantitative studies have examined purpose in life of HIV-positive individuals. The measure used in these studies was the Purpose-in-Life (PIL) Test (Crumbaugh, 1968). Lyon and Younger (2001) found that purpose in life was a stronger predictor of depressive symptoms than was HIV disease severity. Bechtel (1994) found that purpose in life differed significantly between HIV-positive and healthy gay men. These results support previous research that HIV-positive gay men have more adjustment disorders than healthy gay men and that psychological well-being is influenced by the integral role of purpose in life. The results from these studies suggest that PWA feel isolated, withdraw from society, and lack a clear perception of the meaning of their existence. Consequently, hope is diminished and depression is often overwhelming. Therefore, developing an immediate intervention to help PWA find purpose in life is paramount in providing care for them.
The limitations of published studies examining purpose in life are numerous. The majority of previous studies have been qualitative with small samples of White gay men. Future work is needed with more diverse samples that include women and minorities. Results from quantitative studies have supported the results from qualitative studies; however, only one part of the three-part PIL Test was reported. Although previous qualitative studies have made an important contribution to knowledge of purpose in life in PWA, additional work is needed to determine the utility of quantitative measures such as the PIL Test, particularly in the clinical setting.
This PIL Test consists of three parts (described in more detail in the Measures section): Part A (survey), Part B (incomplete sentences), and Part C (paragraph on accomplishments and goals). Although researchers have used Part A of the PIL Test to examine purpose and meaning in PWA (Bechtel, 1994) and in other populations (Gerwood, Leblanc, & Piazza, 1998; Taylor, 1993), this research team was unable to locate any studies that included an analysis and discussion of the results of Part B or C. Although the results from the quantitative items from Part A are useful, the analysis of data from Parts B and C may offer a more complete description of purpose in life considering the previous discussion of qualitative studies in this area. Therefore, participants in this study were asked to complete the entire measure. Because not all participants completed Part C, which was optional, the focus of the analysis was on Parts A and B. Thus, the purpose of this study was to describe the utility of the PIL Test among PWA using both Part A (quantitative) and Part B (qualitative) through the following research questions: (a) How do PWA express meaning and purpose in life as evidenced by their score on Part A of the PIL Test, (b) How do PWA scores compare with normative data and with other samples of PWA, (c) How do PWA express meaning and purpose in life when responding to the open-ended questions on Part B of the PIL Test, and (d) What are the advantages of considering both parts A and B of the PIL Test to assess purpose in life in PWA.
Setting and Sample
A convenience sample of 74 adults with AIDS was recruited from community sites in western Pennsylvania. The sites included a primary care clinic, an HIV/AIDS community-support organization, and an HIV/AIDS personal-care home. All participants gave written informed consent, were 18 years of age or older, and were able to speak, read, and write English. Subjects were excluded if there was evidence of significant neurocognitive impairment as determined by a score of 10 or less on the HIV Dementia Scale (Power, Selnes, Grim, & McArthur, 1993). One participant was deemed ineligible because of an HIV Dementia Scale score of 8.
Participants ranged in age from 26 to 61 years (mean = 40.24, SD = 7.71). The majority of the participants were male (81%), White (61%), and exposed to HIV through men having sex with men (58%). Nearly 70% were disabled, and 72% reported an income of $19,999 or less. Over 90% had at least a high school education (see Table 1).
After approval by the University of Pittsburgh Institutional Review Board, flyers announcing the study were placed at each recruitment site. Potential participants were encouraged to call the researchers or leave their name and phone number on a contact card in a sealed box at the site if they were interested in the study. One member of the research team collected the cards daily and contacted prospective participants who were conditionally accepted into the study if they met the inclusion criteria. A researcher then met with potential participants at the recruitment site or the School of Nursing, obtained informed consent, and conducted neurocognitive screening. After screening, 74 eligible respondents completed the Purpose-in-Life Test and a sociodemographic questionnaire. All participants received a small stipend for their participation in the study.
The HIV Dementia Scale (Power et al., 1993), used to screen for HIV dementia, includes four tests: timed written alphabet (6 points), recall of four items (4 points), cube copy time (2 points), and antisaccadic errors (4 points). The range of scores is 0 to 16; a score of 10 or less suggests HIV dementia. Test-retest reliability (N = 20) over a 6-week time period using least squares linear regression resulted in an R2 value of .75 (p < .0001) (Power et al., 1993).
Crumbaugh and Maholick (1964) developed the PIL Test to evoke responses believed to correspond to the extent that an individual experiences purpose in life. They based the PIL Test on the concept of logotherapy, or therapy exploring meaning (Frankl, 1963).
The PIL Test has three parts. Part A contains 20 statements such as, “In achieving life goals I have …” The response options are on a Likert-type scale ranging from 1 (made no progress whatsoever) to 7 (progressed to complete fulfillment). Part A is objectively scored by summing the numerical values selected for the 20 items. Part A scores can range from 20 to 140. Scores above 112 suggest feelings of a definite purpose and meaning in life, scores below 92 suggest the lack of a clear meaning and purpose, and scores between 92 and 112 are considered in the indecisive range (Crumbaugh, 1968). Split-half reliabilities in samples of adults are reported as .81 (n = 225) (Crumbaugh & Maholick, 1964) and .85 (n = 120) (Crumbaugh, 1968). Stability of the PIL Test ranges from .68 to .83 for test-retest intervals from 1 to 12 weeks (Meier & Edwards, 1974; Reker & Cousins, 1979). The PIL Test demonstrates modest validity with criterion measures in studies of patients and nonpatients of .56 to .68 (Crumbaugh & Maholik, 1964; Meier & Edwards, 1974). In addition, there is evidence of construct validity between purpose in life and life satisfaction (.71, p < .01), psychological well-being (.74, p < .01), and positive affect (.78, p < .01) (Zika & Chamberlain, 1992). Internal consistency reliability of the PIL Test in this sample of 74 PWA using Cronbach's alpha was .91.
Part B of the PIL Test includes 13 incomplete sentences; for example, “More than anything I want to …” Individuals are instructed to work rapidly and complete each sentence with the first idea that comes into their mind. In Part C, respondents are to write a short paragraph detailing their ambitions, goals in life, and progress toward achieving these aims.
An investigator-developed instrument was administered to ascertain participant demographic characteristics. Data were collected on age, gender, race, income, employment status, exposure category, and education.
Quantitative and qualitative techniques were used to analyze the responses from parts A and B respectively.
Quantitative data were entered into a table using the Statistical Package for Social Sciences (SPSS) (SPSS Inc., Chicago, IL) and verified for accuracy by the investigators. SPSS version 11.0 was used to analyze these data. Measures of central tendency (mean) and dispersion (standard deviation and range) were calculated. A confidence interval was calculated for the mean. Scores from this sample were compared with those of normative groups and other HIV samples. Because of violations underlying parametric tests, Spearman's rank order coefficient and the Kruskal-Wallis test were used in the data analysis to assess correlations and differences among scores and demographic characteristics.
The responses to Part B were recorded for each question. All identifiers were stripped from the content of the responses. Content analysis and analytic techniques described by Strauss (1987) were used to identify axial and selective codes and ultimately the core category that integrated all other categories and reflected the essence of the responses.
The investigators independently reviewed and coded responses to each question. First, the data were displayed such that the responses from all 74 participants were listed under each of the 13 incomplete sentences. Each response was then labeled using open coding procedures (Strauss, 1987). The investigators conducted the analyses during five 2-hour meetings assembling the organized codes into an immediate, accessible data display. The open codes were reduced to broader abstract categories within each question, coding consensus was achieved, and conclusions were verified. The same approach was used to further reduce the data to axial and selective codes and the core category that reflected the data as a whole (Figure 1.).
The analysis of Part A data (Table 2) revealed that the PIL scores ranged from 51 to 134 (mean = 100, SD = 19.41). Based on the analysis of this particular sample, there is 95% confidence that the mean PIL score among all PWA lies between 96.33 and 105.32. The wide range reflects the sampling error or range of variation resulting from using an estimate based on a sample of 74 rather than the entire population. Using the established norms (Crumbaugh & Maholik, 1981), the scores indicated that approximately one third of the sample fell into each of the three categories: definite purpose and meaning in life, no clear purpose, and indecisive.
The relationship between selected demographic characteristics and purpose in life was examined using the Spearman rank order coefficient. There were significant associations between purpose in life and race (r = −.460, p = .000), education (r = .246, p = .035), and annual gross income (r = .253, p = .030). No statistically significant relationships were found between purpose in life and gender, age, employment status, or HIV exposure category.
Using the Mann Whitney U test, the data analysis showed a statistically significant difference in the ranked means of purpose in life and race (p = .000). Mean rank scores for White participants (45.38) were significantly greater than non-Whites (25.28). The Kruskal-Wallis test revealed a statistically significant difference in the ranked means of purpose in life and education (χ2 = 18.467, df = 1, p = .002). Post hoc analysis (Tukey) revealed that mean purpose in life scores were significantly different for persons with a baccalaureate degree or higher (mean = 119.73, SD = 9.77) compared with mean scores of persons with a high school diploma (mean = 97.63, SD = 19.44) or persons with an associate degree (mean = 73.50, SD = 12.02).
When compared with other known groups (Table 3), the PIL scores reported by this sample were higher than those reported for PWA (Bechtel, 1994) and with alcohol dependence (Waisberg & Porter, 1994). Scores in this sample of PWA were lower than in patients with recurrent cancer (Taylor, 1993), the elderly (Gerwood et al., 1998), and healthy adults (Crumbaugh, 1968).
The qualitative analysis of Part B (Table 4) revealed “life is meaningful and dynamic” as the core category of all responses to the 13 open-ended questions. The selective codes included: (a) experiences of physical and emotional suffering and (b) goals and accomplishments. Examples of axial codes included debilitation, challenges, health and functioning, security, and connectedness. Illustrative data to support this analysis are described later and convey the viewpoint of the participants.
Experiences of Physical and Emotional Suffering
The selective code “experiences of physical and emotional suffering” included the axial codes of debilitating, challenging, acceptance of death, and rejection of suicide. Examples of responses related to debilitating included “a great upheaval in your life,” “lonely if no one is behind you,” and “something you need help with.” The participants viewed suffering as challenging with responses such as “doesn't get the better of me” and “a work in progress.” Responses such as “hard but a way of grieving and learning” and “a drag and a character-builder” indicated an overlap or the full spectrum of the participant's experiences. Death was viewed as a “new beginning,” “frightening but accepted,” and “another extension of life.” Rejection of suicide was demonstrated through statements such as “not in my view of life,” “is the best way of quitting; I am not a quitter,” and “breaks my heart.”
Goals and Accomplishments
The majority of participants found a meaningful and dynamic life through their accomplishments and future goals. Health and functioning, happiness, security, and connectedness emerged as the axial codes. Examples of responses related to health and functioning and happiness were “to stay healthy so I can enjoy life,” “to be a source of joy and kindness to others,” “accomplish an inner strength,” “achieved a tremendous amount in the personal arena,” and “learned coping and acceptance skills” Responses related to security included “to be free of financial anxiety,” “find the money to go back to school,” and “to own a business.” The participants found a purpose in life through their connections to others. Examples were “to give to others what I'm able to,” “to be an inspiration to others,” and “get my family's trust one day.”
A comparison of qualitative statements made by individuals who expressed on Part A definite purpose and meaning in life, indecisive, or no clear purpose in life was conducted. Similar responses were extracted from the data from all three groups with one exception: the group lacking a clear meaning and purpose in life perceived their experience of physical and emotional suffering as “debilitating” rather than “challenging.” Examples of responses to “My life is …” included “filled with agony,” “dark and chaotic,” “almost over,” and “a mess.”
These results support the notion that examining the PIL score on Part A with the responses from Part B provides a more in-depth understanding of purpose in life as expressed by PWA than scores from Part A alone. Results from Part B provided more detail about purpose and meaning for the sample as a whole. Whereas Part A scores indicated that only one third of the participants perceived a definite purpose and meaning in life, results from Part B revealed that most participants viewed their life as meaningful and dynamic. Part B, which relied on open-ended responses, allowed participants who may have been indecisive using specific choices to the items in Part A to provide more individualized evidence of meaning-making. Meaning-making activities reported in this study were related to professional or family life, education, activity, friendship or experience, and accomplishing goals. However, meaning may also be related to simpler achievements such as coping with everyday life, gratitude for small joys, and consideration for each other. From the sociodemographic data, nearly one fourth of the participants were still able to engage in full or part-time work that potentially can give life meaning. The experience of suffering, poor health, and lack of a meaningful relationship may have contributed to indecisiveness or lack of purpose and meaning in some individuals.
Because participants in this study were most likely at a different stage of accepting their diagnosis because of the time since diagnosis, experiences with symptoms and illness, and side effects from medications, they may have been at different points in achieving purpose and meaning in their lives. In addition, as described by Mellors (1999), the responses on Part B may reflect more of a dynamic process in which PWA achieve a new perspective on life and personal growth despite the inherent uncertainty of living with AIDS.
The higher Part A scores found in this study, when compared with earlier reports of HIV-positive samples (Bechtel, 1994; Lyon & Younger, 2001), may reflect the introduction and use of new treatment options such as antiretroviral therapy. The changes in the management of HIV infection may give PWA increasing hope for the future and improved quality of life. In addition, health care providers are now directing more attention to examining mental health issues such as depression (Lyon & Younger, 2001). It seems reasonable to suggest that if mental health problems such as depression are addressed, PWA are likely to view purpose in life more positively. The large standard deviation may have been indicative of PWA being at different stages in their illness. Other researchers have also found large variability among their samples (Table 3).
A significant relationship was found between race and purpose in life: non-White participants had significantly lower purpose in life scores than White participants. Although there was no significant difference in income between White and non-White participants, possibly other socioeconomic and cultural factors and life experiences may explain these differences. A significant relationship was also found between income and purpose in life: as income increased, there was a corresponding increase in purpose in life. Individuals with greater incomes may have more opportunities to engage in activities and form relationships that enhance purpose in life. Persons with higher education had significantly greater purpose in life than persons with less education. Individuals who experienced more years of education may perceive an increased ability to make life adjustments to accept the uncertain long-term outcomes of their illness. These results are in contrast to results from a previous study that found that purpose in life was unrelated to all demographic measures (Lyon & Younger, 2001). Bechtel (1994), however, found a positive association between active membership in a religious organization and purpose in life.
There were limitations to this study. Although the research team was experienced and knowledgeable regarding the use of qualitative data analytic techniques with interview transcripts, qualitative analysis of the responses to open-ended questions was a new endeavor. The sample demonstrated similar characteristics to the AIDS population in southwestern Pennsylvania; however, it was not necessarily representative of this population in other parts of the United States. The lack of significant relationships between other demographic characteristics may be related to the small sample size. In addition, using a convenience sample may have introduced selection bias. Those who participated in this study may have done so because they viewed research as a way to help others. This altruistic motivation to participate in research may overlap with having goals or purpose in life. Further, the authors were unable to assess whether there were changes in purpose and meaning as PWA lived with their illness because of using a cross-sectional design. In addition, depression or other comorbid conditions that may affect purpose and meaning in life were not assessed. One's religious preferences and degree of spirituality were not addressed in this study. Furthermore, no attempt was made to validate the results with participants.
Results from Part B of the PIL Test broadened the authors' understanding of meaning and purpose in life in community-dwelling PWA. Responses to the open-ended questions in Part B often reflected a stronger sense of purpose and meaning than did the scores on Part A. Implications for research include conducting additional studies that examine the utility of the PIL Test, possibly comparing both Part A and Part B at the individual level. Future studies are necessary before recommendations for instrument modification can be made. Larger cross-sectional and longitudinal studies are needed to explore the impact of socioeconomic status as well as age, gender, race, disease stage, religion, and spirituality on purpose in life. Other factors such as symptom distress, social support, and depression may also have an effect on purpose in life over time.
Studies that explore the relationship between purpose in life and health behavior such as adherence and between purpose in life and outcomes such as well-being, mortality, and morbidity are needed. Qualitative studies using grounded theory methods to increase the understanding of the dynamic process of meaning and purpose in life are needed. This theoretical work would provide the foundation for introducing and evaluating interventions to promote the development of purpose in life.
Additionally, the results of this study have implications for nursing practice. An increasing number of PWA are being managed in the community rather than in acute care settings for both physical and mental health issues. Using the PIL Test on an individual basis with specific emphasis on Part B and Part C may help PWA and clinicians to identify areas for personal growth and possible strategies to enable PWA to achieve personal goals. An evaluation of the instrument's use in the clinical setting would provide useful information as to potential modifications related to administration and evaluation.
Nurses can explore possible positive aspects of living with AIDS, because such an approach can communicate to patients the clinician's willingness to examine this part of their lives. Nurses with a growth focus can empower PWA to develop their own agenda for creating a purposeful life and help them to enact these plans. Nurses can review goals with the individual or help him or her to determine realistic goals. A plan can be developed with the patient as to how to achieve these goals. Nurses need to identify the important motivators for PWA and help them move toward rebuilding life and develop realistic but important short-term and long-term goals for their future. Being able to recognize the resilience in patients does not mean that the pain of living with AIDS is overlooked; however, it is important for practitioners to recognize the growth potential of PWA as they live with this serious illness.
Although the efficacy of nursing interventions to foster purpose in life has not yet been tested, potential strategies exist that enable nurses to provide PWA with an affirmation that their life has value and meaning. Specifically, the nurse can encourage PWA to engage in activities that are in concert with their personal values and goals. Such activities could include support groups, altruistic activities, prayer, reflection, meditation, developing or resuming a favorite pastime, positive reappraisal, or life review therapy (Coward & Reed, 1996).
PWA live with an illness that limits planning for a personal future. The results of this study illustrate that the internal acceptance of the inevitable is possible and that peace with the world is attainable even if the illness remains incomprehensible. One individual who participated in this study stated that life is unconditionally worth living and affirming, and showed evidence of infusing his life with meaning despite the challenges of living with his illness. He said, “Life is a search and constant renewal. We are all often thrown off course. Those who stop looking and searching are those who stop living. I don't want to be one of those people.”
Bechtel, G. A. (1994). Purpose in life
among gay men with HIV
disease. Nursing Connections, 7
Block, S. D. (2001). Psychological considerations, growth, and transcendence at the end of life: The art of the possible. Journal of the American Medical Association, 285
Coward, D. D. (1994). Meaning and purpose in the lives of persons with AIDS
. Public Health Nursing, 11
Coward, D. D., & Reed, P. (1996). Self-transcendence: A resource for healing at the end of life. Issues in Mental Health Nursing 17:275–288.
Crumbaugh, J. C. (1968). Cross-validation of Purpose-in-Life Test
based on Frankl's concepts. Journal of Individual Psychology, 24
Crumbaugh, J. C., & Maholick, L. T. (1964). An experimental study in existentialism. The psychometric approach to Frankl's concept of noongenic neurosis. Journal of Clinical Psychology, 20
Crumbaugh, J. C., & Maholik, L. T. (1981). Manual of instructions for Purpose-in-Life Test
. Murfreesboro, TN: Psychometric Affiliates.
Frankl, V. E. (1963). Man's search for meaning: An introduction to logotherapy
. New York: Pocket Books.
Gerwood, J. B., Leblanc, M., & Piazza, N. (1998). The Purpose-in-Life Test
and religious denomination—Protestant and Catholic scores in an elderly population. Journal of Clinical Psychology, 54
Hall, B. A. (1998). Patterns of spirituality in persons with advanced HIV
disease. Research in Nursing and Health, 21
Lyon, D. E., & Younger, J. B. (2001). Purpose in life
and depressive symptoms in persons living with HIV
disease. Image: Journal of Nursing Scholarship, 33
Meier, A., & Edwards, H. (1974). Purpose-in-Life Test
: Age and sex differences. Journal of Clinical Psychology, 30
Mellors, M. P. (1999). AIDS
, self-transcendence, and quality of life. (Doctoral dissertation, University of Pittsburgh, 1999). Dissertation Abstracts International, 60
Mellors, M. P., Erlen, J. A., Coontz, P. D., & Lucke, K. T. (2001). Transcending the suffering of AIDS
. Journal of Community Health Nursing, 18
Power, C., Selnes, O., Grim, J., & McArthur, J. (1993). The HIV
dementia screen: A rapid diagnostic test. International Conference on AIDS, 9
Reker, G. T., & Cousins, J. (1979). Factor structure, construct validity and reliability of the seeking of noetic goals (SONG) and Purpose in Life
(PIL) Tests. Journal of Clinical Psychology, 35
Reker, G. T., Peacock, E. J., & Wong, P. T. (1987). Meaning and purpose in life
and well-being: A life span perspective. Journal of Gerontology 42:44–49.
Schaefer, S., & Coleman, E. (1992). Shifts in meaning, purpose, and values following a diagnosis of human immunodeficiency virus (HIV
) infection among gay men. Special issue: Sexual transmission of HIV
infection: Risk reduction, trauma, and adaptation. Journal of Psychology & Human Sexuality, 5
Schwartzberg, S. S. (2004). Vitality and growth in HIV
-infected gay men. Social Science & Medicine, 38
Steeves, R. H., & Kahn, D. L. (1987). Experience of meaning in suffering. Image: The Journal of Nursing Scholarship, 19
Strauss, A. L. (1987). Qualitative analysis
. New York: Cambridge.
Taylor, E. J. (1993). Factors associated with meaning in life among people with recurrent cancer. Oncology Nursing Forum, 20
Waisberg, J. L., & Porter, J. E. (1994). Purpose in life
and outcome of treatment for alcohol dependence. British Journal of Clinical Psychology, 33
Zika, S., & Chamberlain, K. (1992). On the relation between meaning in life and psychological well-being. British Journal of Psychology, 83