Archiwa: Bez kategorii - PSYCH.HIV.LAB

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.

Are you interested in learning more about why testing psychological well-being is important? Read our papers in this area and see related research materials.

References:

Rzeszutek, M., Gruszczyńska, E., Pięta, M., & Malinowska, P. (2021). HIV/AIDS stigma and psychological well-being after 40 years of HIV/AIDS: a systematic review and meta-analysis. European Journal of Psychotraumatology, 12:1. Advanced online publication: DOI: 10.1080/20008198.2021.1990527.

Pięta, M., & Rzeszutek, M. (2021). Posttraumatic growth and well-being among people living with HIV: A systematic review and meta-analysis in recognition of 40 years of HIV/AIDS. Quality of Life Research. Advanced online publication. DOI: 10.1007/s11136-021-02990-3

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.

Are you interested in learning more about why testing psychological well-being is important? Read our papers in this area and see related research materials.

References:

Rzeszutek M., Gruszczyńska E., & Firląg-Burkacka E. (2021). Daily Emotional Inertia and Long-Term Subjective Well-Being Among People Living With HIV. Health and Quality of Life Outcomes, 19, https://doi.org/10.1186/s12955-021-01752-6.

Rzeszutek, M., & Gruszczyńska, E. (2021). Inertia, innovation, and crosslagged effects in negative affect and rumination: daily diary study among people living with HIV. Anxiety, Stress, & Coping. Advanced online publication (DOI: 10.1080/10615806.2021.1887481).

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.

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Would you like to find out more about psychological well-being? Read our papers in this area and see related research materials.

Yout help to improve the well-being of people living with HIV/AIDS

Would you like to explore your own psychological well-being and you are a person living with HIV/AIDS? Get in touch with us and contribute to raising reliable knowledge about the quality of life of people living with HIV/AIDS by completing a confidential questionnaire.

Join the project whose results will help to enhance the well-being of people living with HIV/AIDS, inspire specialists to develop effective methods of psychological support and contribute to better planning of assistance programmes. Start by CLICKING HERE.

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.

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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.

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Would you like to learn more about the factors which determine daily well-being of people with HIV? Read our papers in this area and see related research materials.

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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.

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Would you like to learn more on how psychological well-being of persons with HIV changes over time? Read our papers in this area and see related research materials.

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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.

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Do you want to learn more about the emotional state of people with HIV and its relation to the course of the infection? Read our papers in this area and see related research materials.

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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.

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Do you want to learn more about the impact of social status and innate personality traits on the course of HIV infection? Read our papers in this area and see related research materials.

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Who is better at coping with stress – women or men with HIV?

Gender differences concerning psychosocial functioning of persons with HIV constitute a major research theme. For example, a lower level of well-being is recorded among women with HIV than among men with HIV. This can be explained, among others, by stronger stigmatisation of women than of men with HIV. On the other hand, better medical indicators are usually observed in women and it is women who follow medical recommendations more rigorously.

Therefore, the nature of gender differences in health-related quality of life (HRQoL) is particularly complex in this group of patients, and the differences have psychosocial underpinnings more often than medical ones.

The purpose of our study was to examine differences between men and women in terms of well-being and strategies used to cope with stress in the group of 530 people with HIV. We expected that in the studied group women would declare lower levels of well-being than men. Thus, we expected that:

– either men and women would use different strategies of coping with stress;

– or the same strategies would be related to varying degrees with their well-being.

In accordance with the hypothesis, in the studied group of persons with HIV women declared a much lower level of well-being than men. A detailed statistical analysis showed that a worse professional situation and lower level of education might lie at the root of these differences.

Gender differences were also observed among HIV-infected individuals with regard to the strategies used in order to cope with stress.

– Men more frequently used avoidance strategies of coping with stress, that is e.g. psychoactive substance abuse in the face of difficult and stressful life events;

– Women more frequently used positive re-evaluation, that is seeking and emphasising good sides of a stressful situation, which implies making the situation meaningful and noticing its potential for personal development;

– Importantly, it was only in the group of women that the use of strategies of coping with stress was significantly linked to the level of well-being.

The above conclusions may indicate a further direction of research into gender differences with regard to the well-being of people with HIV. Above all, it is necessary to identify the specific nature of the functioning of women with HIV, since due to continued stronger discrimination women are more exposed to negative psychosocial effects linked to the status of a person with HIV.

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Would you like to learn more about which group of persons with HIV copes better with stress – men or women? Read our papers in this area and see related research materials.

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Psychological well-being of people with HIV. Summary

In an attempt to sum up the results of our research presented here we would like to note several recurring themes, which are consistent with other psychological studies on this subject.

Personality traits and medical variables

Firstly, it seems interesting that the results indicate the leading role of personality traits and sociodemographic variables rather than medical variables as factors important for psychological well-being of people with HIV. In other words, it is not the disease itself but social status and stable psychological characteristics that are of key importance for the well-being of persons diagnosed and currently undergoing available medical treatment.

Gender differences and mechanisms behind them

Additionally, one of the most interesting and at the same time still poorly identified areas is the question of gender differences in well-being, and more specifically – mechanisms behind them. Therefore, further research should answer the question why in the group of people with HIV it is women who systematically declare lower levels of psychological well-being than men and how this can be changed.

Changes of well-being over time

As regards changes of well-being over time, probably the social conditions in which people with HIV live are of key importance. Possible support and assistance of social workers should therefore be oriented towards improving this aspect of life. Additionally, it has been shown that constant presence of negative emotions might be related to lower levels of CD4 lymphocytes, which is particularly visible in women.

Role of support given by the patients to their loved ones

An adaptative role of support given to others was recorded for the first time in the group of persons infected with HIV. At the same time, it was pointed out that this adaptative role only occurred in individuals who remained in close relationships.

Practical dimension of scientific studies

In conclusion, it is worth focusing on a possible practical dimension of the outcomes obtained in the context of the situation of persons with HIV in Poland.

In psychological literature there are more and more studies regarding the design of interventions aimed directly at improving the well-being and quality of life of people with HIV. It is important since – as some authors point out – in Poland the question of mental health still is not an integral part of the strategy of preventing HIV infections and care available to this group of patients. Moreover, the impact of HIV infection on patients’ mental health is not only underestimated but sometimes outright ignored.

We face this situation although already in 2008 the World Health Organization (WHO) postulated including mental health in national AIDS programmes and called for holding courses for doctors and consultants helping people with HIV in order to train them in identifying and treating the most frequent mental disorders.

Dissemination of knowledge about the importance of psychological and social factors in the course of HIV infection, achieved through continued research in this area and increased collaboration with doctors, is likely to contribute to halting of the unfavourable trend.

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Would you like to learn more about psychological well-being persons with HIV? Read our papers in this area and see related research materials.

Yout help to improve the well-being of people living with HIV/AIDS