Love and HIV – Why Partner Support Matters So Much

For many people, HIV is still a taboo subject—associated with fear, stereotypes, and outdated knowledge. Although today HIV treatment is so effective that people living with HIV live just as long as those who are not infected, they continue to experience strong stigma—not only from others, but also within their own thoughts, emotions, and relationships. In this context, social support—especially support within a relationship—becomes an invaluable resource. It is not only about practical help, but also about everyday emotional gestures: care, listening, and coping with difficulties together. Research shows that when support is available and reciprocal, it lowers stress levels, reduces the impact of stigma, and improves well-being—for both the person living with HIV and their partner. Yet surprisingly little is known about how such everyday support functions in couples living with HIV. How does the persistent stigma affect relationship quality? Do people with HIV feel entitled to seek help—even from those closest to them?

To answer these and other questions, in our new OPUS 26 grant from the National Science Centre entitled “Dyadic Support Exchange, Affective Well-being, and HIV/AIDS Stigma: A Daily Diary Study of Romantic Couples Including People Living with HIV”, we will examine the daily functioning of romantic couples in which at least one partner is living with HIV. We will focus on how daily exchanges of social support—both giving and receiving—affect emotional well-being and experiences of stigma. The study will be conducted using a diary method: for three weeks, partners will independently complete short online questionnaires every day. This innovative approach will allow us to better understand how support operates in practice—day by day—in real relationships marked by social stigma. A chronic illness such as HIV affects not only the infected individual, but also their loved ones. That is why it is so important to analyze support processes within couples—as a dynamic, co-created relationship.

Our aim is not only to uncover psychological mechanisms, but also to strengthen the visibility and voice of people living with HIV in relationships. We want to show that living with HIV does not mean the end of intimacy, love, and mutual support—and that understanding, acceptance, and a high-quality relationship can be powerful tools against the effects of stigma. The project will be carried out in collaboration with Pozytywni w Tęczy, an organization supporting people living with HIV. By combining scientific knowledge with community action, we want to break down barriers, raise awareness, and strengthen real support.

Embodied Post-Traumatic Growth Among People Living with HIV

The vast majority of psychological research indicates that experiencing trauma mainly leads to negative changes in human psychological functioning, with post-traumatic stress disorder (PTSD) being the most widespread. Nevertheless, relatively recently, scholars’ attention has shifted from focusing solely on the negative to paradoxically also considering the positive consequences of traumatic events, which has shaped a new line of research on post-traumatic growth (PTG). PTG describes the positive changes that may occur after traumatic experiences, such as greater appreciation of life, improved relationships with others, new life opportunities, personal strength, and spiritual transformation. However, after more than a quarter century of PTG research, many questions remain unanswered. One of them concerns whether PTG can be cultivated through psychosocial interventions. Unfortunately, no effective intervention promoting PTG has been developed to date. There is also little research on PTG among patients facing trauma associated with life-threatening illness. Finally, recent studies emphasize the importance of examining body image in the PTG process, which has shaped a new research direction concerning so-called corporeal post-traumatic growth (C-PTG).

In our latest SONATA BIS 14 grant from the National Science Centre, entitled “From the Stigmatized Body to Embodied Post-Traumatic Growth: An International Mixed-Methods Comparative Study to Promote Post-Traumatic Growth Among People Living with HIV”, we aim to develop the first online intervention promoting PTG among people living with HIV. This intervention will place particular emphasis on strengthening positive body image and reducing perceived HIV/AIDS-related stigma, using a mixed-methods research design. In other words, in addition to quantitative analysis of variables, we will also invite people living with HIV to participate in qualitative interviews to help us co-create this intervention. Moreover, HIV/AIDS stigma today remains the main source of trauma among people living with HIV, although its intensity varies significantly across countries worldwide (see structural HIV/AIDS stigma). Therefore, our project will be carried out in three countries: Poland, Ireland, and the United States. Since most research on HIV/AIDS stigma and PTG has so far been conducted in the U.S., it is crucial to expand studies to other countries to obtain a fuller picture of the potential impact of stigma on PTG among people with HIV.

Particularly important is the comparison between the European and American perspectives, as well as the contrasting social attitudes toward people living with HIV in two European countries—Poland, which has one of the highest levels of HIV/AIDS stigma, and Ireland, with one of the lowest levels of HIV stigma in Europe. The project will be implemented in collaboration with the University of Warsaw, Wake Forest University (USA), and the University of Medicine and Health Sciences in Dublin, as well as with organizations supporting people living with HIV in each partner country. Thanks to this collaboration, the project combines scientific inquiry with real social engagement.

In the longer term, this study may significantly broaden our understanding of how psychological interventions—based on the integration of body, emotions, and relationships—can support people struggling with the long-term experience of chronic illness and the stigma associated with it.

40 years of AIDS: Did the social reception of HIV/AIDS change?

In June 2021, exactly 40 years had passed since the first cases of the human immunodeficiency virus (HIV) infection were officially detected and described in scientific literature. During these four decades, we witnessed enormous medical progress in a battle against the previously unknown illness—acquired immunodeficiency syndrome (AIDS). A method to enable a complete eradication of HIV from one’s body still does not exist. However, the influence of HIV infection on one’s health changed drastically. HIV infection is no longer a life threat, and the lifespan of people with HIV is equal to average. Do these changes translate into the independence of one’s well-being from an HIV diagnosis? We tried to answer this question in our meta-analysis covering HIV studies published during the last 40 years.

Our first work referred to the relationship between the well-being of people with HIV and HIV stigma. The results of our analysis demonstrated a negative association between the two variables. The association was particularly strong among the oldest participants in the study. In other words, among older people living with HIV, the stigma frequently coexists with low well-being. However, the most pessimistic result of our work points to no changes in the strength of the well-being–stigma association according to the analysed papers. As such, we cannot indicate a phenomenon of an immunisation against HIV stigma. Nevertheless, our analysis also pointed to an interesting variance of obtained results, depending on the context of a particular study. The context may concern functional characteristics of individuals (e.g., belonging to an ethnic or sexual minority group) and differences in existing structural stigmatisation at both local and national levels. As a result, future studies should take into account both the individual characteristics of people living with HIV and the properties of their environment. 

Individual resources cannot balance the influence of an extremely stigmatising environment. As a consequence, HIV stigma is a culturally varied phenomenon, rather than a universal global trend. This fact can constitute a chance of finding factors that would protect participants against stigmatisation, which is the objective of our last project.

The second of our meta-analyses concerned the relationship between the posttraumatic growth phenomena (PTG) and the psychological well-being of people living with HIV. We wanted to observe whether declared PTG levels would translate into a better quality of life among participants. Even though the majority of previous studies documented positive psychological changes with PTG, there is scientific evidence undermining this association. Taking into account the above premises, we accomplished a systematic review of a wide range of scientific articles. We analysed the relationships between PTG and positive (e.g. life satisfaction, quality of life), as well as negative (e.g., depression, stigma, PTSD) indicators of well-being. Our analysis pointed to associations between declared PTG level and positive, as well as negative, well-being indicators. This result was highly intuitive. What was less intuitive and, as a result, particularly interesting was the strength of the analysed associations. The associations between PTG and positive well-being indicators were statistically stronger than associations between PTG and negative indicators. In other words, this result suggests that the growth following the trauma of HIV diagnosis can favour better coping with the consequences of the infection itself, as well as the persisting social stigmatisation of people living with HIV. 

Emotional inertia and well-being of people living with HIV

The tremendous progress made in the field of medical control of HIV infection has changed the standard course of the illness: from being fatal to a state where it is merely a chronic health problem. Despite this, for many reasons, people living with HIV still experience various negative emotional states (sadness, anger) daily, which – in the long run – may lead to challenges in their everyday lives (e.g., they may trigger depression). This phenomenon has been described as emotional dysregulation. Nowadays, it is mainly associated with the social stigma of specific health conditions such as HIV.

In our research, we analyzed a specific aspect of this dysregulation, referred to as emotional inertia. High emotional inertia means that a person’s emotional state persists over time and does not change dynamically in response to the situational context. In other words, a high level of emotional inertia is the ”lingering” of emotions, indicating that they are more difficult to be adequately regulated, and therefore may be associated with reduced well-being and the risk of depressive symptoms. On the other hand, a low level of emotional inertia means that the emotional state of a person is more flexible in terms of their response to a change in the situational context and the methods of self-regulation used.

Therefore, in our project, we analyzed whether the emotional inertia observed across 5 consecutive days predicts changes in psychological well-being among HIV-positive people in the long run (after 1.5 years). Contrary to our research hypotheses, it turned out that there was no significant connection here. Regardless of whether emotional experiences are more or less inert during a short diary examination, forecasting long-term changes in well-being on this basis is not justified. In other words, we can say that with a high level of emotional inertia, a person who had a higher level of negative emotions one day will also have them the following day, but this does not mean that in the next 18 months we will observe a decrease in their mood and satisfaction with life.

Also, the day-to-day relationship between the lingering of negative emotions and ruminating about them (meaning: deliberating about why something happens to me and why I feel the way I do), was far from obvious. It turned out that emotional inertia is negatively related to inertia in rumination, namely the higher the emotional retention, the lower the tendency to deliberate about these negative emotions. However, emotional inertia was associated with the fact that a high level of negative emotions one day was associated with an increase in rumination on the next day. On the other hand, inertia in rumination was associated with the fact that ruminating one day was associated with an increase in negative emotions on the following day. Thus, it can be seen that the inertia regarding negative emotions and the ability to control them through rumination indicates difficulties in effective self-regulation.

However, research carried out earlier suggests that the dynamics itself is not necessarily inevitably related to psychopathology. There are probably other factors, both in terms of interpersonal differences (e.g., extraversion or neuroticism) and in the context of functioning (e.g., high social stigmatization), which may play a protective role or contribute to the deterioration of psychological well-being among people living with HIV, despite well-adjusted antiviral treatment.

Psychological well-being, or me and my life

Psychological well-being is defined in a variety of ways, however, it can be agreed that this term refers to individually perceived happiness and satisfaction with life. It has been found out that knowing psychological well-being helps to better understand individuals and whole societies. This is why in the last thirty years well-being has become one of the hottest research areas both in psychology and in other social sciences.

In our research we also focused on subjective well-being understood as:

– assessment of experienced positive and negative emotions (happiness);

– as well as assessment of the degree of satisfaction with one’s own life (satisfaction with life).

Likewise, in our research we pay particular attention to the health-related quality of life.

We refer to the so-called biopsychosocial model of health, defining health as a state of physical, psychological and social well-being, not merely the absence of disease or disability.

The health-related quality of life indicates how much – despite the disease –a given person perceives himself or herself in everyday life as high functioning and free from physical, mental and social constraints. Therefore, monitoring quality of life in chronic diseases provides a valuable complement to traditional medical diagnosis.

Thanks to our research you can find out what is potentially important for the well-being of people living with HIV/AIDS.

Why will research on psychological well-being help me and other patients?

If you are in the HIV positive group and you struggle with numerous somatic, psychological and social problems, psychological well-being is particularly important for you. Thanks to research it takes on a practical dimension.

Studies have shown a reduced level of well-being of HIV-infected people in comparison with both the general population and people suffering from other chronic diseases. It may be related to a greater probability of mental disorders in people living with HIV, but also to the course of HIV infection itself. Indeed, lower compliance with medical treatment increases the risk of developing AIDS.

Importantly, despite the identical medical diagnosis and after control of clinical indicators (e.g. CD4 lymphocyte count, viremia level, time since infection, treatment applied) major individual differences in psychological well-being are still found among people living with HIV.

At present, in our research using advanced and innovative methods we are looking for psychosocial factors, that is variables which underpin these differences.

Therefore, in our research, apart from traditional paper questionnaires that the participants complete in clinics and hospitals, we also use an electronic application. It is a very convenient and practical tool, which can be used efficiently and – if necessary – discreetly.

It is in the electronic application that the participants of the study describe day by day how they cope with stress, what their relations with others are like, and how they feel at the end of the day.

What does the daily well-being of people with HIV depend on?

Major differences are observed in affective states and coping with the infection among patients who receive the same treatment and have nearly identical medical indicators describing the course of the disease.

The results of research conducted until now do not answer the question why – despite the same medical diagnosis and after control of clinical indicators (e.g. CD4 lymphocyte count, viremia level) – such significant differences exist in the level of psychological well-being among people living with HIV.

People living  with HIV experience primarily negative consequences of the disease. Their lives may in fact be dominated by the intense chronic stressstemming from the awareness of being infected with HIV. This assumption probably resulted in the neglect of the everyday functioning of this patients in the studies conducted until now. Widely used research methodologies were another obstacle to a better understanding of the mechanisms involved in the daily coping with HIV.

Data analysis methods in the form of online diary measurements have been implemented in health psychology studies relatively recently. They allow researchers to capture individual differences in the everyday functioning of various groups of patients.

One important issue is whether the social support received or given daily may be related to stress and emotional state reported by people living with HIV/AIDS at the end of the day.We also examined whether the above-mentioned effect would be stronger for persons remaining in close romantic relationships than in singles.

To answer these questions, in November 2016 we conducted the first online diary study. It involved a relatively large group for the clinical context, consisting of 115 people with HIV. During five consecutive days the participants described their emotional state, stress related to everyday hassles as well as social support received and provided.

The results proved to be very interesting for both, the participants and the researchers. It was found out that giving social support (e.g. to a partner) is more strongly linked to the emotional state and stress at the end of the day than receiving such support. This result confirms the adaptative role of giving support, which is also found in other groups of patients.

A particularly interesting result concerned the second research question, that is the positive effect of social support was limited only to those participants who at the time of the study were in close romantic relationships. These participants felt better and experienced less stress on the days when they reported giving or receiving more social support than usual.

Surprisingly, a paradoxical effect of everyday support was recorded in singles. On days with higher than typical levels of given or received support they reported both worse emotional well-being and higher stress.

The protective effect of being in a close relationship as well as the aggravating effect of being single single were revealed. Therefore, the results corroborate the fact that relationship status modifies the relations between social support, stress and emotions.

Why was it different for singles?

Probably in the case of singles receiving and giving support entails greater costs than in the case of individuals in close relationships. For singles, getting support requires a greater disclosure of their needs, while providing support is not necessarily reciprocated. Moreover, they may only count on time-limited support whereas the essence of ongoing close relationships is the so-called invisible support, which not only appears spontaneously but also its exchange is smooth and natural. For example, individuals who live on their own are less likely to be spontaneously hugged and served afternoon tea by someone who just sees a sad expression on their face. It is also possible that increased intensity of social interactions in itself becomes a source of additional stress and  deterioration of well-being for singles.

However, all the above explanations require verification.

What determines long-term change in psychological well-being of people with HIV?

To what extent is a person’s well-being constant (e.g. conditioned by innate personality traits), and to what extent does it depend on changing environmental conditions? This may be particularly relevant to individuals living with HIV, who in spite of the huge progress in treatment still experience numerous difficulties determined by the social construction of the disease.

Literature concerning factors related to changes in well-being of people living with HIV is ample but inconsistent. Although the key part played by the course of the infection was identified as the most important factor in this context as recently as a decade ago, research conducted currently foregrounds psychosocial factors.

In our study we wanted to answer two research questions:

– Will psychological well-being of people infected with HIV assessed for a year be constant?

– What will be the relation between the Big Five personality traits (the five-factor model of personality (FFM)) and the stable component of well-being?

To answer these questions we conducted a longitudinal study in a group of 141 persons living with HIV. In other words, we observed patients for a year, administering to them questionnaires every six months, that is obtaining three measurements from each participant (at the beginning, half-way through the study, and at the end of the study).

The results show that the overall psychological well-being of the participants was relatively stable for 12 months, that is it did not change significantly over time. However, its components changed to varying degrees. Interestingly, it was the psychological component of well-being (reported affect)that proved to be most stable, whereas the social component of well-being (relations with others, including sexual relations) proved to be most susceptible to circumstances. This means that affective states may be more linked to the person’s characteristics while relations with others may be more linked to the situational context.

Additionally, what was stable in the well-being of the participants correlated with neuroticism and extraversion. In line with observations from numerous other studies, higher neuroticism and lower extraversion were linked to lower well-being, and clinical variables once again were not significant here.

The results may indicate the direction of actions aimed at helping people living with HIV. Above all, social relations may be relevant here and at the same time social relations are susceptible to change. Therefore, the actions should clearly take into account not only the way people with HIV feel, but also their satisfaction with relations with others, including with regard to sexual functioning.

Emotional state of persons with HIV and clinical parameters – are they linked?

Persons with HIV often experience strong chronic stress which – as current status of knowledge indicates – is more linked to psychosocial factors (e.g. social stigmatisation) than medical ones. This stress is experienced not only by individuals with recently diagnosed HIV infection, but equally frequently persists many years after the infection, which potentially has an adverse effect on the health of this group of patients. On the other hand, the time that elapses after HIV infection has been confirmed may facilitate adaptation, especially if the disease is well controlled by appropriate treatment.

Conclusions from commonly conducted studies focused on negative emotions suggest that the higher the level of negative emotions, the greater the risk of deteriorated immunological functioning and the greater probability of entering the AIDS phase. Decidedly less numerous research results indicate relatively stable levels of positive emotions among persons with HIV, sometimes even many years after the diagnosis, thus showing a relation not only with a slower progress of the disease, but also with a lower risk of death. However, such results should be approached with caution bearing in mind that the participants of such studies are as a rule high functioning individuals. Such persons have greater social capital, are aware of the diagnosis and have access to medical treatment.

In our study we wanted to check to what extent emotional state of people with HIV would be stable in the long term. Secondly, we wanted to verify whether possible changes in the level of emotional state would be related to the course of HIV infection expressed by the current CD4 lymphocyte count.

To answer the research questions we observed the emotional state and course of the disease in 141 patients infected with HIV over a period of a year. Three times (i.e. at six-month intervals) we gave the patients psychological questionnaires and a survey form in which the subjects described their current course of the infection measured, among others, by the CD4 lymphocyte count.

The results of the study show a relation between the level of negative emotions and the level of CD4 lymphocytes. The patients who declared the highest level of negative emotions had at the same time the lowest level of CD4 lymphocytes. Interestingly, higher levels of negative emotions and lower levels of CD4 lymphocytes were recorded in the studied group of women with HIVthan in men infected with this virus.

Thus, our work is consistent with the findings of studies which provide arguments in favour of the hypothesis that chronic presence of negative emotions may be related to a worse clinical condition defined by the CD4 lymphocyte count, which can occur, for example, as a result of the patient’s becoming more easily discouraged and ceasing to follow medical recommendations. The results of our research also identify gender as a moderator of the relation between negative emotions and clinical condition. However, the matter requires further longitudinal studies in view of its potential clinical relevance.

Well-being and clinical parameters, social status and innate personality traits

In our first study we wanted to check to what extent the innate personality traits from the Big Five model (the five-factor model of personality (FFM)) as well as variables describing social status were linked to well-being of individuals with HIV.

The Big Five are the following five personality traits:

– neuroticism (vs emotional constancy) – tendency to experience negative emotions (fear, confusion, anger, guilt) and susceptibility to psychological stress,

– extraversion (vs introversion) – refers to the quality and quantity of social interactions and level of activity, energy, as well as ability to experience positive emotions,

– openness to experience – describes the tendency to positively evaluate life experiences, tolerance of novelty and general curiosity about the world,

– agreeableness (vs antagonism) – describes attitude to other people that manifests itself in altruism (positive attitude) or antagonism (negative attitude),

– conscientiousness (vs lack of direction) – reflects the degree to which an individual is organised, persistent and motivated in pursuing a goal.

To verify our hypothesis we identified among 530 subjects six subgroups differentiated by their well-being. People with HIV were classified to individual groups in accordance with the declared assessment of their own well-being – from very low to very high.

The results of the study provided the information that among the variables describing social status being employed and higher education had the strongest positive relation with psychological well-being.

In turn, in the context of personality traits this effect was most visible for neuroticism, which was the highest in the subgroups which assessed their well-being as the worst.

Interestingly, current health condition (e.g. level of CD4 lymphocytes, course of treatment, entering the AIDS phase) did not differentiate well-being of the subjects at all.

Our studies have found out that in the group undergoing antiretroviral therapy it was not the disease itself (HIV infection parameters indicating an objectively worse state of health) but selected sociodemographic characteristics and innate personality traits are of key importance for the well-being of persons with HIV. This is consistent with the results of other studies in this area. Probably, what matters here is the huge progress in treatment of persons with HIV, thanks to which HIV infection itself is no longer definitely fatal but constitutes a chronic medical problem which can be controlled.