Research Progress on the Meaning of Life for People Living with HIV/AIDS ()
1. Introduction
The Joint United Nations Programme on HIV/AIDS (UNAIDS) released its latest report, indicating that as of 2022, 39.0 million people were living with HIV/AIDS (PLWHA) worldwide, with 1.3 million new infections. Nearly one-quarter of these individuals did not receive timely treatment, resulting in one HIV-related death every minute [1]. According to data from the Chinese Center for Disease Control and Prevention, as of 30 June 2024, 31 provinces (autonomous regions and municipalities), excluding Hong Kong, Macao, and Taiwan region, reported a total of 1,329,127 individuals living with HIV/AIDS. Among them, 740,787 were HIV-positive individuals, and 588,340 were diagnosed AIDS patients. A total of 474,006 deaths were also reported. Based on China’s seventh national census, approximately one in every 10,086 people is living with HIV [2]. Although HIV/AIDS has been transformed into a manageable chronic illness through antiretroviral therapy (ART), which has significantly extended life expectancy, the disease’s transmission methods and incurable nature still evoke widespread fear. It remains associated with moral judgment and stigma. As a result, many individuals living with HIV are marginalized [3], which negatively impacts their social integration [4].
Additionally, the illness causes significant physical suffering. These combined pressures have greatly diminished patients’ quality of life, leading to a range of mental health challenges. Studies show that 24.4% of individuals living with HIV have at least one mental health disorder [5] [6]. A sense of meaning in life―defined as the fundamental motivation guiding one’s values, goals, and life purpose [7]―is negatively correlated with mental health problems: the lower the sense of meaning, the higher the incidence of such issues [8]. As an important psychological capital and psychological experience, the meaning of life has an important impact on people’s physical and mental health [9], and is closely related to the quality of life and social behavior of patients [10].
This paper aims to review current research on the sense of meaning in life among people living with HIV/AIDS, offering a reference for prevention, treatment, and care strategies, to improve mental health and quality of life for this population.
2. The Concept and Theoretical Model of Meaning in Life (MIL)
2.1. The Concept of Meaning in Life
The concept of life’s meaning is inherently complex and has been explored by numerous scholars across various disciplines and dimensions. In psychology, Viktor Frankl [10] first introduced the concept in his 1963 work, defining it as the pursuit of life goals and values. He emphasized that this pursuit serves as an intrinsic motivation and survival instinct, enabling individuals to overcome adversity by finding meaning even in the most difficult circumstances. In 1989, Wong and colleagues [11] proposed that the sense of meaning in life comprises five components: cognitive, motivational-emotional, relational, personal (encompassing personality traits and social roles), and existential. They emphasized that individuals can attain a higher level of life meaning through self-transcendence. In 1991, Baumeister [12] argued that the sense of meaning in life is rooted in the individual’s recognition of the value and significance of their existence. From a cognitive perspective, this includes four essential needs: goals, values, efficacy, and self-worth. When these needs are met, individuals are more likely to perceive their lives as meaningful. In 2005, Emmons [13] described the sense of life meaning as a psychological state experienced during the pursuit of personal goals and values. From a motivational standpoint, they identified four components of meaning: purpose, motivation, spiritual striving, and goals―with “goal” being the foundational element of a meaningful life. In 2014, Heintzelman and King [14] asserted that the sense of life meaning is not exclusive to a few, but rather a universal psychological experience. They identified three dimensions for evaluating whether life has meaning: coherence, purpose, and significance.
In the philosophical domain, Richard Rorty [15] contended that the concept of the “meaning of life” is not a priori. He rejected the notion of grounding life’s meaning in grand religious or scientific meta-narratives and instead proposed that meaning arises from “small narratives” shaped by individuals within their specific social roles. Similarly, Chinese philosopher Fu Pei-rong [16] argued that the sense of life meaning must be understood at three levels: physical, psychological, and spiritual. The physical level pertains to external accomplishments such as wealth and social status; the psychological level involves emotional fulfillment and intellectual growth; while the spiritual level emphasizes deep reflection and transcendence.
2.2. Theoretical Model of Meaning in Life
Three major theoretical models conceptualize the meaning of life, each offering a unique perspective.
・ The Meaning-Making Model of Meaning in Life, proposed by Park and colleagues [17], distinguishes between two core types of meaning: global meaning and situational meaning. This model explains how individuals, whether actively or passively, construct personal meaning systems in response to shifts in experience, values, time, and environment. It highlights the dynamic interaction between global meaning―overarching beliefs and goals―and situational meaning, which emerges in specific life events or contexts.
・ The Hierarchical Model of Meaning, developed by Schnell [18] based on Action Theory, organizes life meaning into five interconnected levels: cognitive, action, goal, sources of meaning, and overall sense of meaning. This framework explores how meaning operates at different psychological and behavioral layers and reveals the multifaceted sources from which meaning is derived. It enables individuals to analyze and reflect on their life meaning from multiple vantage points.
・ The Meaning Maintenance Model (MMM), proposed by Heine and colleagues [19], synthesizes earlier meaning-construction theories and emphasizes the human need to preserve a coherent sense of meaning. When this sense is disrupted or threatened, individuals activate compensatory mechanisms to restore meaning―often by redirecting it to other areas of life. This model underscores meaning as a dynamic, self-regulating system that enables psychological balance in the face of existential threat or uncertainty
3. A Tool for Measuring the Sense of Meaning in Life among People Living with HIV/AIDS
3.1. Universal Life Meaning Measurement Tool
3.1.1. Purpose in Life Test (PIL)
The Purpose in Life Test (PIL) was developed by Crumbaugh and Maholick in 1968 [20], grounded in Viktor Frankl’s logotherapy theory. It is designed to assess the extent to which individuals perceive meaning and purpose in their lives. The scale consists of three sections: Section 1, contains 20 self-report items encompassing five dimensions―love of life, life goals, autonomy, avoidance, and anticipation of the future―rated on a 7-point Likert scale. Total scores range from 20 to 140, with higher scores indicating a stronger sense of life meaning and purpose. Section 2, involves open-ended sentence completions, encouraging reflection on personal beliefs and values. Section 3 requires participants to narratively describe their life goals.
The PIL has demonstrated strong psychometric properties, with a test-retest reliability of 0.88 and Cronbach’s alpha coefficients ranging from 0.70 to 0.97 [21]. In China, Xiao Rong [22] tested the reliability and validity of the translated version, reporting a Cronbach’s alpha of 0.878, indicating good internal consistency.
3.1.2. Life Attitude Profile (LAP)
The Life Attitude Profile (LAP) was developed by Reker [23] based on the Purpose in Life (PIL), the Perceived Goal Seeking Test, the Personal Orientation Scale, and the Death Perspective Scale. The scale is designed to assess an individual’s sense of life meaning and goals, along with their motivation to pursue meaning in life. In 1990, He Yingqi [24] translated the LAP into Chinese and adapted it to include two higher-order factors (Pursuit and Affirmation, Existence and Transcendence) and six dimensions: Meaning Will, Life Purpose, Life Control, Suffering Acceptance, Existence Fulfillment, and Death Acceptance, with a total of 39 items. The test-retest reliability of the full scale is reported to be 0.85. Among these dimensions, the items related to Death Acceptance and Existential Awareness are reverse-scored, while the remaining items are forward-scored. Higher scores reflect a stronger sense of life meaning.
3.1.3. Meaning in Life Questionnaire (MLQ)
The Meaning in Life Questionnaire (MLQ) was developed by Steger in 2006. The MLQ consists of two subscales: the Experience of Meaning in Life (MLQ-P) and the Search for Meaning in Life (MLQ-S), with a total of 10 items. Specifically, the scale includes five items measuring the experience of meaning in life and four items assessing the search for meaning, all scored on a 7-point Likert scale. The total score ranges from 10 to 70. Scores below 38 suggest low levels of life meaning; scores between 38 and 51 suggest an unclear sense of meaning; and scores above 51 indicate a clear sense of meaning in life. The Cronbach’s alpha coefficient for the MLQ-P subscale is 0.80, while the Cronbach’s alpha for the MLQ-S subscale ranges from 0.73 to 0.92. In 2010, Liu Sisi [25] introduced the MLQ to China and translated it into Chinese.
3.1.4. Life Assessment Meaning Scale (SMILE)
SMILE was developed and validated by Fegg [26] in 2008. First, respondents are asked to identify 3 to 7 areas that provide them with a sense of meaning in life. They then use a Likert scale to rate both the importance and current satisfaction of each area. Each item is rated on a scale from ‘strongly disagree’ to ‘strongly agree,’ with the total score ranging from 6 to 42. Higher scores reflect a stronger sense of life meaning.
3.1.5. Three-Dimensional Meaning in Life Scale (3DM)
The Three-Dimensional Meaning in Life Scale (3DM) was developed by Martela [27]. The English version of the 3DM includes three dimensions―Consistency, Goals, and Importance―comprising a total of 11 items. A back-translation method was applied, and responses were rated on a 7-point Likert scale, where 1 indicates “strongly disagree” and 7 indicates “strongly agree.” Higher scores reflect a greater perceived sense of meaning in life. The Cronbach’s α for the total scale is 0.94, while the coefficients for the subscales―Consistency, Goals, and Importance―are 0.84, 0.90, and 0.90, respectively. Miao Miao [28] translated the scale into Chinese and reported good reliability and validity.
3.2. Measurement Tools for a Sense of Meaning in Life among HIV/AIDS Patients
Carolyn M. Audet [29] developed the HIV Meaning of Life Scale in 2015 to assess psychological well-being, optimism, self-efficacy, and related constructs. The scale consists of four items and has a Cronbach’s coefficient of 0.80. Each item is rated on a 7-point Likert scale, ranging from 1 (strongly disagree) to 7 (strongly agree). Total scores range from 4 to 28, with higher scores reflecting a stronger sense of life meaning. A key limitation of this scale is that it was primarily developed for low-income, HIV-positive African American men, which may limit its generalizability to other populations.
4. Research on the Role of Meaning in Life for People Living with HIV/AIDS
Numerous studies, both in China and internationally, have explored the role of life meaning in depth. Liu Yang [30] examined the relationship between life meaning and relapse among 151 HIV-positive individuals in a drug rehabilitation center. The study found that individuals with a higher sense of life meaning were less likely to relapse and that life meaning could predict the likelihood of relapse among HIV-positive drug users. International research on the role of life meaning has been more extensive. Leslie R. Brody [31] conducted a qualitative study examining how expressions of life meaning in writing by Black women living with HIV (WLWH) related to anxiety, depression, ART adherence, and viral load, and explored the effectiveness of meaning-centered therapy. After six months of intervention, participants who developed a stronger sense of life meaning and other positive traits showed reduced levels of depression. Moreover, meaning therapy also had emotional benefits for the facilitators delivering the intervention. These findings are consistent with those reported by Rozhdestvenskiy [32]. Similar effects have also been observed in other intervention studies. Francisco Javier Rosas-Santiago [33] recruited 140 Mexican HIV patients to investigate how life meaning and goal setting influenced ART adherence. The study found that setting short-term goals enhanced patients’ sense of life meaning, which in turn improved ART adherence, highlighting the positive impact of life meaning on treatment compliance. Furthermore, Gail Ironson [34] conducted a longitudinal study starting in 1997, involving biannual questionnaires and interviews with 177 HIV-positive individuals. Using mixed methods, the researchers categorized participants’ sense of life meaning into high, medium, and low levels. Ana Reis [35] conducted a questionnaire survey of 94 HIV/AIDS patients in a specialist outpatient clinic to investigate the relationship between treatment adherence, CD4+ lymphocyte levels, emotional balance, mood, sense of life meaning, and quality of life and used a machine learning model to predict the risk of quality of life. The study found that quality of life was significantly positively correlated with treatment adherence, sense of life meaning, and emotional balance, indicating that a sense of life meaning has a positive impact on quality of life, consistent with the findings of Bamidele [36].
5. Factors Influencing the Sense of Meaning in Life among People Living with HIV/AIDS
5.1. Demographic Factors
Demographic factors typically include age, education level, occupation, economic status, and marital status. In Steve Russe’s study [37], most participants had limited access to education, with only a few completing secondary education or above. Their income sources were restricted, and many experienced financial hardship. Russe’s research highlighted poverty as a major stressor that diminishes both well-being and one’s sense of life meaning.
5.2. Cultural and Religious Beliefs
In Steve Russe’s study, many HIV-positive participants in Uganda who believed in Jesus reported feeling blessed, finding meaning in life, and expressing greater hope for treatment. Beyond research on Christian HIV-positive individuals, Natawan Khumsaen [38] conducted a survey of 400 patients at an HIV clinic in a secondary hospital in rural Thailand to examine the relationship between spiritual well-being and spiritual practices. The results showed that individuals engaged in spiritual practices reported greater spiritual well-being and a stronger sense of life meaning, which was associated with higher ART adherence among female patients.
5.3. Social Support
Similarly, Steve Russe highlighted the positive influence of a sense of life meaning. The study showed that patients who formed new friendships at HIV treatment centers not only received emotional encouragement but also shared experiences in coping with the virus. Such social support fostered a sense of community belonging and strengthened patients’ sense of life meaning. In a related study, Irman Nuryadin Siddik [39]. Surveyed 75 Muslim HIV/AIDS survivors to examine the relationship between piety (ikhlas), social support, and sense of life meaning. The results showed that patients with a higher level of social support had a stronger sense of meaning in life. In a recent 2023 study, Arini Akmilatun Nisak [40]. Surveyed 107 outpatients at a hospital to analyze the relationship between social support and a sense of meaning in life. The study also indicated that those who received higher levels of social support had a stronger sense of meaning in life.
5.4. Social Discrimination
Domestic research has demonstrated the negative impact of social discrimination on life meaning. Lu Linxin [41]. conducted a domestic study investigating the sense of life meaning among 474 HIV-positive university students who engage in male-male sexual behavior. The results indicated that, compared to heterosexual and those attracted to more than one gender, HIV-positive students with same-sex orientation reported the highest levels of social exclusion. On the Self-Transcendence Sense of Life Meaning Scale, individuals with same-sex orientation scored lower than their heterosexual counterparts. Social discrimination was found to be negatively correlated with the sense of life meaning.
5.5. Psychological Factors
Overseas studies have examined the relationship between psychological factors and the sense of meaning in life among individuals infected with HIV. In 2015, Michelle Teti [42] conducted a study in which 83% of the participants were low-income women living with HIV. The participants reported positive changes in their lives during the study. The results indicated that psychological factors―such as anxiety, depression, loneliness, stigma, and low self-efficacy―were significantly associated with the sense of meaning in life among individuals living with HIV. The study suggested that negative psychological states reduce the sense of meaning in life, whereas positive psychological factors enhance individuals’ sense of control and strengthen their life meaning. In this regard, international scholars have also conducted in-depth research on individuals living with HIV. Based on Bastaman’s theory, Imroatu Sholikhati Setyo [43] conducted in-depth interviews with housewives who had been living with HIV for two years to explore their process of finding meaning in life. The study found that although these housewives went through painful and seemingly meaningless phases, they eventually discovered meaning through social interaction and continual mindset adjustment, ultimately redefining the purpose of their lives.
6. Intervention Measures for the Sense of Meaning in the Lives of HIV-Positive Individuals
6.1. Logotherapy
Logotherapy emphasizes the exploration of life’s meaning as a means to enhance psychological resilience and improve individuals’ ability to cope with illness. In 2017, Yafi Sabila Rosyad [44] conducted a study involving 102 HIV-positive men who have sex with men (MSM) in West Sumatra, Indonesia. The results showed that participants with a stronger sense of life meaning were 27.9 times more likely to adhere to antiretroviral therapy (ART) than those with a lower sense of meaning. This was the first study to demonstrate a strong association between life meaning and treatment adherence. In contrast, Fataneh Bakhshi [45] conducted a randomized controlled trial involving 180 HIV-positive individuals. From this group, 24 individuals with low life meaning scores were selected to receive group-based meaning therapy. The Schneider Hope Scale was used to assess levels of life hope. Post-intervention, participants showed a significant increase in hope scores, leading the researchers to conclude that meaning therapy plays a positive role in enhancing life hope among individuals living with HIV. Moreover, beyond improving treatment adherence and instilling hope, multiple studies (see references) have demonstrated that meaning therapy supports the reconstruction of life during illness. This, in turn, helps reduce negative emotions and fosters proactive coping strategies.
6.2. Social Support
Social support, a key resource for alleviating stress and adversity, also plays a vital role in enhancing the sense of life meaning among individuals living with HIV. Wirya Dipo Utama [46] conducted a questionnaire-based study with 44 people living with HIV/AIDS (PLWHA). The results indicated that peer social support and gratitude were positively correlated with participants’ sense of life meaning. In other words, individuals who reported higher levels of support and gratitude also experienced a stronger sense of meaning in life. The study suggests that social support helps mitigate the psychological burden of HIV and contributes to greater life purpose. Further evidence comes from qualitative research. In 2017, Nur Amin Barokah Asfari [47] explored how waria (Indonesian trans. women) living with HIV/AIDS discovered life meaning. The study, based on in-depth interviews with one HIV-positive waria, revealed that initial experiences of discrimination and financial hardship led to feelings of meaninglessness. However, with emotional and practical support from family and friends, the participant was able to reconstruct a meaningful life, adhere to her medication regimen, adopt a healthier lifestyle, and regain a sense of self-worth. These findings are consistent with Utama, collectively underscoring the critical role of social support interventions.
6.3. Psychological Counseling
Psychological counseling offers individuals living with HIV/AIDS a safe and private space to reflect on and better understand their current circumstances. Counselors assist patients in managing emotional distress, addressing psychological challenges, and discovering personal meaning in life. Anis Lud Fiana [48] conducted a qualitative literature review focusing on the counseling experiences of individuals with HIV/AIDS. The findings showed that psychological counseling enabled patients to realistically assess their situations, alleviate psychological stress, reconstruct life meaning, and maintain or enhance their self-esteem.
6.4. Setting Life Goals
Clear life goals provide individuals living with HIV/AIDS with direction and motivation. For example, Wiwit Novi Febrianti [49] used qualitative phenomenological methods, including purposive sampling, observation, and interviews, to study two married PLWHA in Saratoga, USA, over two months. The researchers explored how various aspects of life’s meaning influenced their family lives. The study found that participants with a stronger sense of life meaning were more likely to pursue the happiness and well-being of their families. These findings underscore the importance of setting life goals as a key factor in improving the psychological well-being and relational dynamics of individuals living with HIV/AIDS and their families.
7. Issues and Prospects.
7.1. Overview of Domestic and International Research
7.1.1. Research Regions
Research on the meaning of life among individuals living with HIV/AIDS began in the 20th century, with early studies primarily conducted in developing countries. Given China’s vast geographical diversity, future research should distinguish between economically developed and underdeveloped regions. Region-specific investigations into patients’ sense of life meaning would provide an empirical basis for designing locally adapted intervention strategies.
7.1.2. Research Participants
International studies have largely focused on adults, sex workers, and individuals of varying gender identities living with HIV. Among these groups, research on adults has explored changes in the meaning of life throughout the chronic progression of the disease, while studies on sex workers have examined the relationship between occupational stigma and life meaning. However, this research has yet to fully capture the heterogeneity of the HIV-positive population. Future studies should broaden the scope to include participants of different age groups, cultural backgrounds, and social contexts.
In contrast, domestic research on life meaning has addressed a range of groups―such as adolescents, university students, cancer patients, and nurses [51]-[55]. However, studies specifically targeting HIV-positive individuals remain scarce, indicating a critical gap in the literature.
7.2. Scales for Measuring the Sense of Meaning in Life
Currently, six internationally recognized scales are used to assess the sense of life meaning, with one specifically designed for individuals living with HIV/AIDS. However, that HIV-specific scale was developed based on a small sample of low-income African American men and is rarely applied in broader research contexts. In China, no HIV/AIDS-specific meaning-of-life scale has been developed or localized. The most frequently used tools remain the Purpose in Life Questionnaire (PIL) and the Meaning in Life Scale (MILS).
Importantly, most Western-developed scales are grounded in existentialist and individualist frameworks. However, life meaning is a culturally nuanced construct―shaped by distinct emotional expressions, psychological stressors, and self-perceptions across cultures. Developing a culturally localized life meaning scale for HIV/AIDS patients in China would allow for a more accurate assessment of how these individuals perceive and experience life meaning within their sociocultural environment, thereby facilitating more effective and culturally appropriate psychological interventions.
7.3. Research Design in Studies on Life Meaning and HIV/AIDS
International research on the meaning of life among people living with HIV/AIDS (PLWHA) has adopted various methodologies, including quantitative, qualitative, and mixed-method approaches. Qualitative studies typically use semi-structured or open-ended interviews, case studies, and phenomenological analyses. Quantitative studies include cross-sectional surveys, longitudinal designs, and randomized controlled trials (RCTs).
However, qualitative studies often suffer from limited sample sizes―commonly involving fewer than six participants, and sometimes just a single case. This restricts theoretical saturation and introduces subjective interpretation, reducing the robustness of the findings. Similarly, most longitudinal studies are conducted over short timeframes, making it difficult to observe dynamic changes in life meaning.
In comparison, domestic research remains underdeveloped. It primarily relies on cross-sectional quantitative studies, lacks intervention trials, and almost entirely omits qualitative research. Future studies should adopt more diverse methodological designs to enhance our understanding of life meaning among PLWHA and to inform strategies that improve their overall quality of life.
7.4. Influencing Factors on the Sense of Life Meaning among PLWHA
Domestic and international research indicates that the sense of life meaning among individuals living with HIV/AIDS is shaped by multiple interrelated factors, including economic status, educational attainment, psychological variables, social support, experiences of discrimination, and religious beliefs.
Despite some progress, existing studies are limited in two key ways. First, the depth and breadth of analysis on each factor remain inadequate, with several areas still at an early stage of exploration. Second, there is limited investigation into the interactions among these factors; few studies integrate them into a unified theoretical or empirical framework.
In addition, several potentially significant influences remain understudied, such as age, gender differences, specific sources of social support (e.g., family support), social security, adverse drug reactions, and concerns about reproduction or childbearing. A comprehensive exploration of these factors and their complex interrelations would enrich the theoretical understanding of life meaning in the context of HIV and provide actionable insights for improving patients’ psychological well-being, quality of life, and treatment adherence. This represents a pressing and promising area for future research.
7.5. Interventions Targeting the Sense of Meaning in Life among PLWHA
In China, there is currently a lack of intervention-based research addressing the sense of life meaning among individuals with HIV/AIDS. Internationally, interventions typically focus on meaning-centered therapy, social support programs, psychological counseling, and goal-setting in therapeutic contexts. Nevertheless, due to limitations in understanding the influencing factors, these interventions are often not systematic or comprehensive enough to meet the diverse and evolving needs of patients.
To improve this, several strategies can be considered:
・ Integrate traditional Chinese wellness practicesinto existing therapeutic approaches [56]-[57], such as Five-Animal Exercises, Eight Brocades, and Five Elements Music Therapy [58]-[60].
・ Expand health education beyond disease knowledge to include life skills training and self-regulation strategies, helping patients cultivate resilience.
・ Incorporate Eastern philosophical perspectives―especially those rooted in traditional Chinese thought―into health education, guiding patients to reflect on life from a broader, more meaningful perspective.
・ Establish long-term evaluation systems for tracking the outcomes of interventions, allowing continuous improvement and optimization of intervention models.
By combining culturally adapted psychological frameworks with empirical research, future interventions can more effectively support the well-being and personal growth of people living with HIV/AIDS.
8. Summary
In conclusion, while international research on the sense of life meaning among individuals living with HIV/AIDS has achieved notable breadth―exploring diverse aspects such as population subgroups, mental health, quality of life, and treatment adherence―there is still a lack of in-depth investigation into specific issues within these dimensions. In China, where the number of HIV-positive individuals continues to rise, the challenges of HIV/AIDS prevention and control remain urgent. It is therefore imperative to undertake comprehensive and contextually grounded research on the sense of life meaning among Chinese patients. Such efforts can help individuals living with HIV/AIDS rediscover the value and beauty of life, even as they confront the physical and psychological burdens of the disease.
Funding
This study was funded by the National Social Science Fund of China (21BMZ018).