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• Open access
• Published: 07 December 2021

The lived experience of HIV-infected patients in the face of a positive diagnosis of the disease: a phenomenological study

• Behzad Imani   ORCID: orcid.org/0000-0002-1544-8196 1 ,
• Shirdel Zandi 2 ,
• Salman khazaei 3 &
• Mohamad Mirzaei 4  

AIDS Research and Therapy volume  18 , Article number:  95 ( 2021 ) Cite this article

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AIDS as a human crisis may lead to devastating psychological trauma and stress for patients. Therefore, it is necessary to study different aspects of their lives for better support and care. Accordingly, this study aimed to explain the lived experience of HIV-infected patients in the face of a positive diagnosis of the disease.

This qualitative study is a descriptive phenomenological study. Sampling was done purposefully and participants were selected based on the inclusion and exclusion criteria. Data collection was conducted, using semi-structured interviews. Data analysis was performed using Colaizzi’s method.

12 AIDS patients participated in this study. As a result of data analysis, 5 main themes and 12 sub-themes were identified, which include : emotional shock (loathing, motivation of social isolation), the fear of the consequences (fear of the death, fear of loneliness, fear of disgrace), the feeling of the guilt (feeling of regret, feeling guilty, feeling of conscience-stricken), the discouragement (suicidal ideation, disappointment), and the escape from reality (denial, trying to hide).

The results of this study showed that patients will experience unpleasant phenomenon in the face of the positive diagnosis of the disease and will be subjected to severe psychological pressures that require attention and support of medical and laboratory centers.

Patients will experience severe psychological stress in the face of a positive diagnosis of HIV.

Patients who are diagnosed with HIV are prone to make a blunder and dreadful decisions.

AIDS patients need emotional and informational support when they receive a positive diagnosis.

As a piece of bad news, presenting the positive diagnosis of HIV required the psychic preparation of the patient

Introduction

HIV/AIDS pandemic is one of the most important economic, social, and human health problems in many countries of the world, whose, extent and dimensions are unfortunately ever-increasing [ 1 ]. In such circumstances, this phenomenon should be considered as a crisis, which seriously affects all aspects of the existence and life of patients and even the health of society [ 2 ]. Diagnosing and contracting HIV/AIDS puts a person in a vague and difficult situation. Patients suffer not only from the physical effects of the disease, but also from the disgraceful consequences of the disease. HIV/AIDS is usually associated with avoidable behaviors that are not socially acceptable, such as unhealthy sexual, relations and drug abuse: So the patients are usually held guilty for their illness [ 3 ]. On the other hand, the issue of disease stigma in the community is the cause of rejection and isolation of these patients, and in health care centers is a major obstacle to providing services to these patients [ 4 ]. Studies show that HIV/AIDS stigma has a completely negative effect on the quality of life of these patients [ 5 ]. Criminal attitudes towards these patients and disappointing behavior by family, community, and medical staff cause blame and discrimination in patients [ 6 ]. HIV/AIDS stigma is prevalent among diseases, making concealment a major problem in this behavioral disease. The stigma comes in two forms: a negative inner feeling and a negative feeling that other people in the community have towards the patient [ 7 ]. The findings of a study that conducted in Iran indicated that increasing HIV/AIDS-related stigma decreases quality of life of people living with HIV/AIDS [ 8 ]. Robert Beckman has defined bad news as “any news that seriously and unpleasantly affects persons’ attitudes toward their future”. He considers the impact of counseling on moderating a person’s feeling of being important [ 9 ]. Therefore, being infected by HIV / AIDS due to the stigma can be bad news, which will lead to unpleasant emotional reactions [ 10 ]. Studies that have examined the lives of these patients have shown that these patients will experience mental and living problems throughout their lives. These studies highlight the need for age-specific programming to increase HIV knowledge and coping, increase screening, and improve long-term planning [ 11 , 12 ].

A prerequisite for any successful planning and intervention for people living with HIV/AIDS is approaching them and conducting in-depth interviews in order to discover their feelings, attitudes; their views on themselves, their illness, and others; and finally, their motivation to follow up and the participation in interventions [ 13 ]. Accordingly, the present study aimed to explain the lived experience of HIV-infected patients in the face of a positive diagnosis of the disease, since the better understanding of the phenomena leads to the smoother ways to help and care for these patients.

Study setting

In this study, a qualitative method of descriptive phenomenology was used to discover and interpret the lived experience of HIV-positive patients, when they face a positive diagnosis of the disease. The philosophical strengths underlying descriptive phenomenology afford a deeper understanding of the phenomenon being studied [ 14 ]. Husserl’s four steps of descriptive phenomenology were employed: bracketing, intuiting, analyzing and interpreting [ 15 ].

Participants and sampling

Sampling was done purposefully and participants were selected based on inclusion criteria. In this purposeful sampling, participants were selected among those patients who had sufficient knowledge about this phenomenon. The sample size was not determined at the beginning of the study, instead, it continued until no new idea emerged and data-saturated. Participants were selected from patients who were admitted to the Shohala Behavioral Diseases Counseling Center in Hamadan-Iran. The center has been set up to conduct tests, consultations, medical and dental services, and to distribute medicines among the patients. Additional inclusion criteria for selecting a participant are: having a positive diagnosis experience at the center, Ability to recall events and mental thoughts in the face of the first positive diagnosis of the disease, having psychological and mental stability, having a favorable clinical condition, willingness to work with the research team, and the possibility of re-access for the second interview if needed. Exclusion criteria were unwillingness to participate in the study and inability of verbal communication in Persian language.

Data collection

The interviews began with a non-structured question (tell us about your experience with a positive diagnosis) and continued with semi-structured questions. Each interview lasted 35–70 min and was conducted in two sessions if necessary. All interviews were conducted by the main investigator (ShZ) that who has experience in qualitative research and interviewing. The interview was recorded and then written down with permission of the participant.

Data analysis

The descriptive Colaizzi method was used to analyses the collected data [ 16 ]. This method consists of seven steps: (1) collecting the participants’ descriptions, (2) understanding the meanings in depth, (3) extracting important sentences, (4) conceptualizing important themes, (5) categorizing the concepts and topics, (6) constructing comprehensive descriptions of the issues examined, and (7) validating the data following the four criteria set out by Lincoln and Guba.

Trustworthiness criteria were used to validate the research, due to the fact that importance of data and findings validity in qualitative research [ 17 ]. This study was based on four criteria of Lincoln and Guba: credibility, transferability, dependability, and conformability [ 18 ]. For data credibility, prolong engagement and follow-up observations, as well as samplings with maximum variability were used. For dependability of the data, the researchers were divided into two groups and the research was conducted as two separate studies. At the same time, another researcher with the most familiarity and ability in conducting qualitative research, supervised the study as an external observer. Concerning the conformability, the researchers tried not to influence their own opinions in the coding process. Moreover, the codes were readout by the participants as well as two researcher colleagues with the help of an independent researcher and expert familiar with qualitative research. Transferability of data was confirmed by offering a comprehensive description of the subject, participants, data collection, and data analysis.

Ethical considerations (ethical approval)

The present study was registered with the ethics code IR.UMSHA.REC.1398.1000 in Hamadan University of Medical Sciences. The purpose of the study was explained and all participants’ consents were obtained at first step. All participants were assured that the information obtained would remain confidential and no personal information would be disclosed. Participants were also told that there was no need to provide any personal information to the interviewer, including name, surname, phone number and address. To gain more trust, interviews were conducted by a person who was not resident of Hamadan and was not a native of the region, this case was also reported to the participants.

Twelve HIV-infected participated in this study. The mean age of the participants was 36.41 ± 4.12 years. 58.33% of the participants were male and 41.66% were married. Of these, 2 were illiterate, 2 had elementary diploma, 6 had high school diploma and 2 had academic education. Six of them were unemployed, 5 were self-employed and 1 was an official employee. These people had been infected by this disease for 6.08 ± 2.71 years, in average (Table 1 ).

Analysis of the HIV-infected patients’ experiences of facing the positive diagnosis of the disease by descriptive phenomenology revealed five main themes: emotional shock, the fear of the consequences, the feeling of the guilt, the discouragement, and the escape from reality (Table 2 ).

Emotional shock

Emotional shock is one of the unpleasant events that these patients have experienced after facing a positive diagnosis of the disease. This experience has manifested in loathing and motivation of social isolation.

These patients stated that after facing a positive diagnosis of the disease, they developed a strong inner feeling of hatred towards the source of infection. The patients feel hatred, since they hold the carrier as responsible for their infection. “…After realizing I was affected, I felt very upset with my husband, I did not want to see him again, because it made me miserable, I even decided to divorce ….”(P3).

Motivation of social isolation

The experiences of these patients showed that after facing the incident, they have suffered an internal failure that has caused them to try to distance from other people. These patients have become isolated, withdrawing from the community and sometimes even from their families. “…After this incident, I decided to live alone forever and stay away from all my family members. I made a good excuse and broke up our engagement…” (P7).

Fear of the consequences

Fear of the consequences is one of the unpleasant experiences that these patients will face, as soon as they receive a positive diagnosis of the disease. Based on experiences, these patients feel fear of loneliness, death, and disgrace as soon as they hear the positive diagnosis.

Fear of the death

The patients said that as soon as they got the positive test results, they thought that the disease was incurable and would end their lives soon. “…When I found I had AIDS, I was very upset and moved like a dead man because I was really afraid that at any moment this disease might kill me and I would die …” (P1).

Fear of loneliness

The participants stated that one of the feelings that they experienced as soon as they received a positive diagnosis of the disease was the fear of being alone. They stated that at that moment, the thought of being excluded from society and losing their intimacy with them was very disturbing. “…The thought that I could no longer have a family and had to stay single forever bothered me a lot, it was terrifying to me when I thought that society could no longer accept me as a normal person …” (P10).

Fear of disgrace

One of the feelings that these patients experienced when faced the positive diagnosis of the disease was the fear of disgrace. They suffer from the perception that the spread of news of the illness hurts the attitudes of those around them and causes them to be discredited. “…It was very annoying for me when I thought I would no longer be seen as a member of my family, I felt I would no longer have a reputation and everyone would think badly of me …” (P2).

Feeling of the guilt

From other experiences of these patients in facing the positive diagnosis of the disease is feeling guilty. This feeling appears in patients as feeling of regret, guilty and remorse.

Feeling of regret

These patients stated that they felt remorse for their lifestyle and actions as soon as they heard the positive diagnosis of the disease, because they thought that if they had lived healthier, they would not have been infected. “…After realizing this disease, I was very sorry for my past, because I really did not have a healthy life. I made a series of mistakes that caused me to get caught. At that moment, I just regretted why I had this disaster …” (P11).

Feeling guilty

The experience of these patients has shown that after receiving a positive diagnosis of the disease, they consider themselves guilty and complain about themselves. These patients condemn their lifestyle and sometimes even consider themselves deserving of the disease and think that it is a ransom that they have paid back. “…after getting the disease, I realized that I was paying the ransom because I was hundred percent guilty, I was the one who caused this situation with a series of bad deeds, and now I have to be punished …” (P5).

Feeling of conscience-stricken

One of the experiences that these patients reported is the pangs of conscience. These patients stated that after receiving a positive diagnosis of the disease, the thought that as a carrier they might have contaminated those around them was very unpleasant and greatly affected their psyche. “…after getting the disease. It was shocked and I was just crazy about the fact that if my wife and children had taken this disease from me, what would I do, I made them hapless … and this as very annoying for me …” (P8).

Discouragement

Discouragement is an unpleasant experience that patients experienced after receiving a positive HIV test results. Discouragement in these patients appears in the suicidal ideation and disappointment.

Suicidal ideation

The patients stated that they were so upset with the positive diagnosis of the illness and they immediately thought they could not live with the fact and the best thing to do was to end their own lives. “…The news was so bad for me that I immediately thought that if the test result was correct and I had AIDS, I would have to kill myself and end this wretch life, oh, I had a lot of problem and the thought of having to wait for a gradual death was horrible to me …” (P12).

Disappointment

The experience of these patients shows that a positive diagnosis of the disease for these patients leads to a destructive feeling of disappointment. So that they are completely discouraged from their lives. These patients think that their dreams and goals are vanished and that they have reached the end and everything is over. “…It was a horrible experience, so at that moment I felt my life was over, I had to prepare myself for a gradual death, I was at marriage ages when I thought I could no longer get married, I saw life as meaningless …” (P7).

Escape from reality

The lived experience of these patients shows that after receiving a positive diagnosis of the disease, they found that this fact was difficult to accept and somehow tried to escape from the reality. This experience has been in the form of denial and trying to hide from others.

One of the experiences of these patients in dealing with the positive test result of this disease has been to deny it. In this way, patients believed that the test result was wrong or that the result belonged to someone else. For this reason, the patients referred to other laboratories after receiving the first positive diagnosis of the disease. “…After the lab told me this and found out what the disease really was, I was really shocked and said it was impossible, it was definitely wrong and it is not true … I could not believe it at all, because I was a professional athlete and this could not happen to me. So I immediately went to a bigger city and there I went to a few laboratories for further tests …” (P6).

Trying to hide

These patients stated that after receiving the first positive diagnosis of the disease, they thought that no one should notice their disease and should remain anonymous as much as possible. “…I immediately decided that no one in my city should know that I got this disease and the news should not be spread anywhere, so I discard my phone number through which our city laboratory communicated with me and I came here to do a re-examination and go to the doctor, and after all these years, I always come here again for an examination …” (P4).

In this qualitative study, we attempted to discover lived experience of HIV-infected patients in the face of a positive diagnosis of the disease. Therefore, a descriptive phenomenological method was applied. As a result of this study, based on the experiences of the HIV-infected patients, the five main themes of emotional shock, fear of the consequences, feelings of guilt, discouragement and, escape from reality were obtained.

In this study, it was shown that the confrontation of these patients with the positive diagnosis of the disease causes them to experience a severe emotional shock. In this regard, Yangyang Qiu et al. [ 19 ] argued that anxiety and depression are very common among HIV-infected patients who have recently been diagnosed with the disease. The experience of the participants has shown that this emotional shock appears in the form of loathing and the motivation of social isolation. In fact, in these patients, the feeling of the loathing is an emotional response to the primary carrier that has infected them. The study of Imani et al. [ 20 ] have shown that decrease emotional intelligence in an environment where there is an HIV carrier, other people hate him/her, because they see him/her as a risk factor for their infection. The experience of the participants has also shown that receiving a positive diagnosis will motivate social isolation in these patients. Various studies have revealed that one of the consequences of AIDS/HIV that patients will suffer from, is social isolation [ 21 , 22 ].

Another experience of the participants, according to this study is fear of the consequences. This phenomenon appears in these patients as fear of the death, fear of loneliness, and fear of disgrace. Due to the nature of the disease, these patients feel an inner fear of premature death, as soon as they receive a positive diagnosis. In this regard, the study of Audrey K Miller et al. [ 23 ] showed that death anxiety in AIDS patients is a psychological complication. the participants have stated that they are very afraid of being alone after receiving a positive diagnosis, which is a natural feeling according to Keith Cherry and David H. Smith [ 24 ]; because these patients will mainly experience some degree of loneliness. HIV-infected patients also experienced a fear of disgrace, which will go back to the nature of the disease and people’s insight; but they should be aware that, as Newman Amy states, AIDS/ HIV is a disease, not a scandal [ 25 ].

Another experience of the participants in dealing with the positive diagnosis of the disease is guilt feeling. The patients will experience feelings of regret, the feeling guilty and feeling of the conscience-stricken. The experience of the participants shows that they regret their past. Earlier studies have also revealed that regret for the past is a common phenomenon among the patients living with HIV [ 26 , 27 , 28 ]. HIV-infected feel guilty while facing the positive diagnosis of the disease and consider themselves the main culprit of the situation. They often play a direct role in their infection, and their past lifestyle for sure [ 29 ]. Our study also found that these patients feel the conscience-stricken after a positive diagnosis, because they suspect that they may have infected people around them. This disease can be easily transmitted from the carrier to others if the health protocols are not followed [ 30 , 31 , 32 ].

Another experience of HIV-infected in dealing with the receiving a positive diagnosis of the disease is discouragement. These patients are disappointed and sometimes decide to suicide. Based on the lived experience of HIV-infected, it was found that receiving a positive diagnosis of the disease, will discourage them from life and patients will be disappointed in many aspects of life. Studies have shown that AIDS/HIV, as a crisis, will greatly reduce the patients' life expectancy and that they will continue to live in despair [ 33 ]. Studies also stated that they considered suicide as a solution to relieve stress when receiving a positive diagnosis. In this regard, various studies have emphasized that among the AIDS/HIV patients, loss of self-esteem and severe stress have led to high suicide rates [ 34 , 35 , 36 ].

According to the patients, trying to escape from reality is another phenomenon that they will experience. This phenomenon will occur in patients as denial and trying to hide the disease from others. Based on the lived experience of these patients, it was found that after facing a positive diagnosis, HIV-infected tend to deny that they are infected. In this regard, various studies have shown that AIDS/HIV patients in different stages of the disease and their lives try to deny it in different ways [ 37 , 38 , 39 ]. The HIV-infected also stated that at the beginning of the positive diagnosis of the disease, did not want others to know, so they wanted to hide themselves from others in any way possible. In this regard, Emilie Henry et al. [ 40 ] have shown that a high percentage of the patients living with AIDS/HIV have tried that others do not notice that they are ill.

One of the strengths of this study is the methodology of the study, because in this study, an attempt has been made to use descriptive phenomenology to explain the lived experience of HIV-infected patients when faced with a positive diagnosis of this disease. In fact, in this study, patients' experience of this particular situation was identified, and with careful analysis, the experiences of these people became codes and concepts, each of which can be a bridge that keeps the path of modern knowledge open to help these patients. One of the limitations of this study is the generalizability of the findings because patients’ experiences in different societies that have cultural, religious, subsistence, and economic differences can be different.

The results of this study showed that patients will experience unpleasant experiences in the face of receiving a positive diagnosis of the HIV. Patients’ unpleasant experiences at that moment include emotional shock, fear of the consequences, feeling guilty, discouragement and escape from reality. Therefore, medical and laboratory centers must pay attention to the patients' lived experience, and try to support the patients through education, counseling and other support programs to minimize the psychological trauma caused by the disease.

Availability of data and materials

The datasets used and analyzed during the current study are available from the corresponding authors through reasonable request.

Acknowledgements

The authors would like to express their gratitude to the Hamadan Health Network, the Hamadan Shohada Behavioral Diseases Counseling Center, and the participants who helped us in this study.

The study was funded by Vice-chancellor for Research and Technology, Hamadan University of Medical Sciences (No. 9812209934).

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Department of Operating Room, School of Paramedicine, Hamadan University of Medical Sciences, Hamadan, Iran

Behzad Imani

Department of Operating Room, Student Research Committee, Hamadan University of Medical Sciences, Hamadan, Iran

Shirdel Zandi

Research Center for Health Sciences, Hamadan University of Medical Sciences, Hamadan, Iran

Salman khazaei

Department of Epidemiology, School of Public Health, Hamadan University of Medical Sciences, Hamadan, Iran

Mohamad Mirzaei

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Contributions

BI designed the study, collected the data, and provide the first draft of manuscript. ShZ designed the study and revised the manuscript. SKh participated in design of the study, the data collection, and revised the manuscript. MM participated in design of the study and revised the manuscript. All authors read and approved the final manuscript.

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Correspondence to Shirdel Zandi .

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This study is the result of a student project that has been registered in Hamadan University of Medical Sciences of Iran with the ethical code IR.UMSHA.REC.1398.1000.

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Imani, B., Zandi, S., khazaei, S. et al. The lived experience of HIV-infected patients in the face of a positive diagnosis of the disease: a phenomenological study. AIDS Res Ther 18 , 95 (2021). https://doi.org/10.1186/s12981-021-00421-4

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DOI : https://doi.org/10.1186/s12981-021-00421-4

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Case study of a patient who has been diagnosed HIV positive

14 Case study of a patient who has been diagnosed HIV positive Brian Thornton Chapter aims • To provide you with a case study of a patient who is living with a diagnosis of HIV together with the rationale for care • To encourage you to research and deepen your knowledge of HIV/AIDS Introduction This chapter provides you with an example of the nursing care that a patient with HIV might require. The case study has been written by an HIV nurse specialist and provides you with a patient profile to enable you to understand the context of the patient. The case study aims to guide you through the assessment, nursing action and evaluation of a patient with HIV together with the rationale for care. Patient profile Ms Jessie Chitalwa is a 27-year-old Nigerian lady who has lived in the UK since the age of 22. She is doing a business studies degree at a local university. She attended accident and emergency (A&E) with a 2-week history of increasing shortness of breath and lethargy. She tested HIV positive on a point of care test in A&E. Her working diagnosis is pneumocystis pneumonia and she has been prescribed intravenous co-trimoxazole to treat this. She arrived on the ward overnight, at 11 p.m., and you are her nurse for the morning shift, starting at 7.15 a.m. Activity A definition of HIV was given in Chapter 1 and asked you to revise your anatomy and physiology (see Montague et al 2005 ). Before reading the case study, try to find out how HIV affects the immune system. What key issues did you discover for how HIV affects the immune system? This comprehensive article may help you to research this: Flannigan J (2008). HIV and AIDS: transmission, testing and treatment. Nursing Standard 22(34):48–56. Online. Available at: http://nursingstandard.rcnpublishing.co.uk/archive/article-hiv-and-aids-transmission-testing-and-treatment (accessed July 2011). Assessment on admission When greeting and introducing yourself to Ms Chitalwa, you notice she is very anxious and visibly upset. Her vital signs are: pulse 118 regular, respiratory rate 28, temperature 37.3°C tympanic, oxygen saturation 94% (receiving 2-L oxygen via nasal specs). She is in a bay with five other patients on your medical ward. During your assessment discussion with Ms Chitalwa, using the Roper, Logan and Tierney ( Roper et al 2000 ) model of activities of daily living, you note that she is normally totally independent in all activities of daily living (see Table 14.1 ). Table 14.1 Assessment of Ms Chitalwa using the Roper, Logan and Tierney model Maintaining a safe environment She requires assistance due to reduced mobility and lethargy. Local hazards include the oxygen tubing for her nasal specs and the drip stand and tubes for her intravenous co-trimoxazole Communicating She is fluent in English, which is her second language. Shortness of breath is reducing her sentence length. Recent HIV diagnosis has been a shock to her and she appears to be upset and withdrawn. She is very worried that her HIV status will be discovered by the other patients in her bay, as well as by her flatmates when they come to visit her. She seems reluctant to communicate about her HIV diagnosis. She has spent a lot of her time reading her bible. She is happy to be called Jessie Breathing Jessie becomes short of breath easily. She is receiving oxygen therapy via a humidification system and nasal specs. She finds it difficult to have a deep breath, and starts coughing Eating and drinking Her appetite has been reduced for the last week. She is a vegetarian. She feels nauseous when she tries to eat Eliminating She is too weak to walk to the bathroom, even with assistance Personal cleansing and dressing She is able to wash herself with a bowl at the bedside. She has been unable to bathe or shower for the last 3 days due to her lethargy and shortness of breath Controlling body temperature Currently no problems Mobility Severely reduced. Can barely manage five steps without becoming distressed. Oxygen and IV therapy are continuous so her range is already restricted due to the length of the tubes and IV lines Working and playing Does not want to discuss this right now Expressing sexuality Does not want to discuss this right now Sleeping Feels tired but has had a very unsettled night. Has not slept properly for several days, cannot remember how long Dying She is convinced that she is dying. The recent HIV diagnosis has made her resign herself to this fact. She has seen people die of HIV in Nigeria when she was younger and remembers the pain and suffering they went through, as well as the stigma for them and their families Ms Chitalwa’s problems Based on your assessment of Ms Chitalwa, the following problems should form the basis of your care plan: • Jessie is unable to independently maintain a safe environment. Activity See Appendix 4 in Holland et al (2008) for possible questions to consider during the assessment stage of care planning. • Jessie has reduced communication ability, partly due to shortness of breath and partly due to her current psychological state and fear of her HIV diagnosis being discovered. • Jessie has pneumonia. • Jessie has reduced blood oxygen saturation levels and is short of breath. • Jessie has reduced appetite and is at risk of inadequate nutritional intake. • Jessie has reduced mobility and is at risk of deep vein thrombosis and other hazards of prolonged immobility. • Jessie is unable to walk to the bathroom. • Jessie is tired but unable to sleep. • Jessie is worried that she is going to die. • Jessie has an intravenous cannula in situ, and is receiving intravenous therapy. Jessie’s nursing care plans 1. Problem: Jessie is unable to independently maintain a safe environment. Goal: To ensure a safe environment. Nursing action Rationale Ensure the call buzzer is within reach at all times So Jessie is able to summon assistance as required and not attempt to do things beyond her current level of capability, potentially causing her condition to deteriorate or for her to fall Ensure Jessie is aware that she should summon assistance and not try to push herself to do things which she is not currently capable of To re-enforce to Jessie that she is unwell and that it is OK for her to ask for assistance Evaluation: Jessie’s environment remained safe throughout her hospital stay and recovery. 2. Problem: Jessie has reduced communication ability, partly due to shortness of breath and partly due to her current psychological state and fear of her HIV diagnosis being discovered. Goal: To ensure optimum communication with Jessie. Goal: To support Jessie psychologically with her recent HIV diagnosis. Nursing action Rationale Try to ask closed questions, if possible To reduce the need for Jessie to feel she has to respond with long answers Ensure privacy for discussions, taking Jessie to a private room as soon as this is feasible Jessie will hopefully be more able to have conversations about HIV infection in a private setting, when she is aware that the rest of the patients will not be able to overhear Make Jessie aware of the good prognosis and longevity for people with HIV infection To reduce her fears of death or pain because of her HIV infection To enable Jessie to realise that she should recover and lead a normal life, but will have to take medicines every day Refer to psychology service To ensure an appropriately trained health professional is able to assess and support Jessie with her concerns and worries Ensure all healthcare professionals are aware of Jessie’s concerns over confidentiality of her HIV infection To reduce the risk of her HIV status being mentioned or discussed either in front of her, therefore disclosing to the other patients in her bay, or in public areas where the discussions could be overheard by other patients or visitors Evaluation:

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• Published: 30 April 2024

Variations in the sleep-related breathing disorder index on polysomnography between men with HIV and controls: a matched case-control study

• Yen-Chin Chen 1 , 2 , 3 , 10 ,
• Chang-Chun Chen 4   na1 ,
• Wen-Kuei Lin 5 ,
• Han Siong Toh 6 , 7 , 8 ,
• Nai-Ying Ko 2 , 3 &
• Cheng-Yu Lin 5 , 9 , 10  

BMC Infectious Diseases volume  24 , Article number:  456 ( 2024 ) Cite this article

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Both sleep-related breathing disorders (SRBDs) and HIV infection can interfere with normal sleep architecture, and also cause physical and psychological distress. We aimed to understand the differences in the obstructive patterns, sleep architecture, physical and psychological distress when compared between people living with HIV (PLWH) and matched the severity of SRBDs controls.

A comparative study using matched case-control design was conducted. Men with HIV infection (case group) were enrolled from 2016 to 2019. A control group with HIV seronegative men were matched for SRBDs severity, and were selected from sleep medicine center database for comparison.

The mean age of the 108 men (including 54 cases and 54 matched controls) was 33.75 years. Central-apnea index (CI) was higher in the case group rather than matched controls (mean CI, 0.34 vs. 0.17, p  = 0.049). PLWH had a lower mean percentage of stage 3 sleep (10.26% vs. 13.94%, p  = 0.034) and a higher percentage of rapid eye movement sleep (20.59% vs. 17.85%, p  = 0.011) compared to matched controls. Nocturnal enuresis and sleepiness causing traffic accidents were more frequent complaint in PLWH compared to controls.

Conclusions

Early detected SRBDs and subtypes in PLWH to begin treatment for the underlying cause could reduce the risk of sleepiness-related traffic accidents.

Peer Review reports

Introduction

Sleep-related breathing disorders (SRBDs) is a chronic disease, it causes collapse in the upper airway while sleeping resulting in intermitted cessation or attenuation of breathing [ 1 ]. Patients with SRBDs may suffer from a spectrum of SRBDs, including obstructive sleep apnea (OSA), sleep-related hypoventilation (i.e., hypopnea or oxygen desaturation), and central sleep apnea (CSA) [ 1 ]. It has been associated with a greater risk of depression [ 2 ] and all-cause mortality risk [ 3 ]. It could cause a significant physiology and psychology impacts not only in people living with human immunodeficiency virus (PLWH) but also in general population such as abnormal sleep architecture [ 4 ], sleepiness, poor sleep quality [ 5 ], anxiety and depression [ 6 ].

CSA is less common than OSA that is characterized by observed absence airflow with a lack of inspiratory effort during sleep [ 7 ]. Those with CSA are caused by the brain failing to trigger the wake-up signal resulting in temporarily stopping breathing, which is the critical difference between OSA and CSA. Conditions that cause or lead to CSA remain unclear. Previous research indicated that patients with a certain type of neurological problems such as stroke, Parkinsonism, or substance use were highly correlated to CSA [ 8 ].

SRBDs has been observed as a highly prevalent problem among PLWH, with prevalence rates ranging between 41.0 and 44% [ 9 , 10 , 11 ]. In Taiwan, we surveyed 54 male living with HIV and found that 62.96% of PLWH with sleep problems were diagnosed as SRBDs [ 4 ]. A large multicenter cohort study revealed that a 1.42-fold risk of SRBDs in men living with HIV as compared to HIV-negative persons [ 12 ]. Since HIV virus is able to pass the blood-brain barrier (BBB), enter the central nervous system, and resulting in neurocognitive impairment [ 13 ]. Despite free support highly active antiretroviral therapy (HAART) in Taiwan, we found that the incidence of neurological disorders in PLWH still significantly increased from 22.16 per 1000 person-years in 2000 to 25.23 per 1000 person-years in 2010 through National Health Insurance Research Database (NHIRD) [ 14 ]. In addition, high prevalence of substance use in PLWH. A retrospective study in a sexual health clinic in London and found that subjects who self-reported substance use had higher odds of acquiring new HIV infection [ 15 ]. However, there is a lack of relevant evidence on the type of SRBDs in PLWH. In addition, there is very limited evidence for knowing what differences in a type of SRBDs between PLWH and the general population.

It has long been known that when people infected with HIV experience negative neurological complications due to HIV virus affects crucial parts of the brain resulting in poor sleep quality, anxiety and depression [ 16 ]. However, there are few studies to know the differences in the obstructive patterns, sleep architecture, physical and psychological distress when compared between PLWH and matched the severity of SRBDs controls.

Study design

This was a retrospective, matched 1:1 case-control study that reviewed all have done polysomnography (PSG) test HIV cases with sleep complaint admitted to an academic tertiary care center in the southern of Taiwan. Sleep complaint was defined as Chinese version Pittsburgh Sleep Quality Index (C-PSQI) scores greater than 5. This study was approved by the Ethics Committees of National Cheng Kung University Hospital (No. A-BR-109-031). This research was performed in accordance with relevant regulations. Prior to examination and data collection, the participants provided informed consent.

A total of 54 PLWH with sleep complaint were tested by PSG for further diagnosis sleep disorders from 2016 to 2018. For details about the participant recruitment process including subject sampling, enrollment, experimental protocol, and data acquisition have been described in detail previously [ 4 ]. We performed power calculations using G*Power 3.1.9.4 based on our sample size. The input parameters were set as follows: α = 0.05, sample size of 54 for both the experimental and control groups. The resulting power was calculated to be 0.84.

A total of 1,810 data were selected from a secondary database of individuals seeking effective strategies for resolving their sleep problems at a sleep medicine center in southern Taiwan between October 14, 2016, and August 31, 2018. Participants who had been treated for sleep-related breathing disorders or whose polysomnography data were incomplete were excluded. Additionally, we excluded subjects with repeated data ( n  = 152), females ( n  = 478), and those who were under 20 years of age or had missing age information ( n  = 72). The final number of controls for matching was 1,108 subjects from the sleep center data. These controls were frequency-matched to the PLWH group based on age (in 5-year intervals) and the severity of SRBDs, which were classified as no [apnea hypopnea index (AHI) < 5/hour], mild (AHI between 5–15/hour), or moderate to severe (AHI over 15/hour) in a 1:1 case-to-control ratio.

Objective measures: PSG

Somte polysomnography V1 monitor for patients (Compumedics Sleep, Abbotsville, Australia) was applied in this study. The signals records contained brain wave (C3-A2, C4-A1, O1-O2), nasal airflow in and out as you breathe via nasal cannula, eye movement through bilateral electrooculogram, chin electromyography, electrocardiogram, breathing effort and rate via rib cage and abdominal excursion, oxygen saturation by a finger pulse oximetry and bilateral leg movement.

a. SRBD index Polysomnography data was collected and digitized on a computerized polysomnography system operated by experienced technician and interpreted by accredited sleep specialist (CY Lin) in a single reading laboratory following the American Academy of Sleep Medicine (AASM) criteria. Sleep-disordered breathing was identified according to polysomnography-determined AHI ≥ 5 events/h [ 17 ]. The AHI represents the average number of apneas and hypopneas that occur per hour during sleep, and it also serves a marker to evaluate of the severity of SRBDs [ 18 ]. There were three main types of SDB as manifested in sleep apnea: OSA, CSA, and mixed sleep apnea.

b. Sleep architecture The sleep architecture refers to the basic structure of the sleeping pattern, it was calculated by PSG-derived measures included total sleep time (TST) and sleep latency (SL) in minutes, the percent of TST spent in stage 1, sleep 2, stage 3, stage of rapid eye movement (REM) sleep, and sleep efficiency (SE) (%). In addition, arousal index was measured. Each sleep characteristics were described as followings:

TST was determined as the total amount of hours asleep in bed;

SL was the minutes from the time the subject got sleep onset in bed;

The percent of TST spent in stage 1–3 and REM sleep, was determined by the percentage of time the subject was sleeping from sleep-onset during nocturnal sleep time;

SE defined as the percentage of time spent asleep while in bed.

Subjective measures: questionnaires

a. Chief complaints of SRBDs Chief complaints were evaluated with a 7-item scale with dichotomous responses (yes/no) that assessed nonrestorative sleep, snoring, morning dry mouth, hypersomnia, morning headache, nocturia and sleepwalking. Nocturia was identified as “subject was complaint that the need to get up one or more times per night to urinate” [ 19 ].

b. Physical distress

(1)Daytime sleepiness.

The Chinese version of the Epworth Sleepiness Scale (C-ESS) evaluates the participants’ level of daytime sleepiness with 8 items scored from 0, never with the condition, to 3, almost with the condition. The sum of 8-item scores range from 0 to 24, a total score of 10 or higher suggests daytime sleepiness [ 20 ]. Cronbach’s alpha coefficient of 0.81 in the sleep-disordered breathing subjects [ 20 ].

The Chinese version of Snore Outcomes Survey (C-SOS) evaluates patients’ snoring frequency, severity, and sequela with 8 items Likert scale scored from 0, worst, to 100, best. The total score is the mean of 8 items score ranges from 0 to 100, a score of 55 or lower defines as having snoring [ 21 ]. Cronbach’s alpha of 0.86 in subjects with sleep-disordered breathing [ 21 ].

c. Psychological distress The Hospital Anxiety and Depression Scale (HADS) is used to assess psychological distress such as anxiety and depression for patients [ 22 , 23 ]. The scale was designed with a special focus on specific issues and is especially relevant for use with somatic medicine.

Clinical indicators collection

Clinical variables related to SRBD outcomes including age, BMI, neck size, educational level, work status, comorbidities (hypertension, diabetes mellitus, hyperlipidemia and hyperuricemia), and chief sleep complaints were collected. HIV-related clinical indicators were retrieved from patients’ electronic medical records including time since HIV diagnosis, HAART use, years from HAART initiation, viral load undetectable (it was defined as when patients’ plasma viral load was fewer than 20 copies/mL), the mean cluster of differentiation 4 (CD4) value at time of examination.

Data analysis

The data were analyzed by statistic software (R software version 4.0.3 [ 24 , 25 ]).. The chi-square tests and t-tests were used in the analysis of categorical measures and continuous measures, respectively. A p-value fewer than 0.05 is considered to be statistically significant.

Demographics

The study group consisted of 108 adults, with 54 PLWH and 54 controls. Their demographic characteristics are provided in Table  1 . The age and severity of AHI were not significantly differences due to matching successfully. The demographic characteristics that differed between PLWH and controls were BMI and neck size. BMI of PLWH has an average of 3.48 kg/m 2 less than the controls ( p  = 0.002) as well as the neck size in PLWH was smaller than the controls ( p  = 0.001).

Objective differences in sleep architecture

We examined objective differences in sleep using SRBD index (Table  2 ) and sleep architecture (Fig.  1 ). The mean central-apnea index of SRBD was higher in PLWH than the controls (0.34 vs. 0.17 events/hour, p  = 0.049). We also saw that total sleep time, the percentage of sleep stage 3 and REM sleep, and the arousal index were significantly differences between PLWH and the controls. Total sleep time was longer in PLWH than the controls (417.05 min vs. 344.48 min, p  < 0.001). The percentage of sleep stage 3 was lower in PLWH than the controls (10.26% vs. 13.94%, p  = 0.034). In the opposite, the percentage of REM sleep stage was higher in PLWH than the controls (20.59% vs. 17.85%, p  = 0.011). The mean arousal index was higher in the controls than the PLWH (28.51 vs. 20.61 events/hour, p  = 0.012).

Comparison of polysomnography indexes between two group (54 HIV vs. 54 paired match group without HIV)

Differences in chief complaints of SRBDs

We compare the main sleep complaints differences between PLWH and the controls using subjective report (Table  3 ). We found that the top three chief complaints of SRBD no matter in PLWH or controls were snoring, non-restorative sleep, and dry mouth when waking up. PLWH is more likely to have nocturnal enuresis ( p  = 0.050) and traffic accident due to sleepiness complaints than the controls ( p  = 0.045). However, the snoring complaints is less in PLWH than the controls ( p  = 0.029).

Subjective differences in physical and psychological distress

Our study also included several subjective measures of physical and psychological distress. There were significantly differences noted in daytime sleepiness and snore between PLWH and controls (Fig.  2 ). The intensity of sleepiness (mean scores 8.13 vs. 9.98, p  = 0.047) and snore (mean scores 72.08 vs. 57.15, p  < 0.001) were lower in PLWH than controls.

Comparison of sleep-related questionnaires scores between two group (54 HIV vs. 54 paired match group without HIV)

Discussions

This is the first study to date comparing subjective and objective sleep-related data in PLWH and matched controls based on a one-night polysomnography study. We observed that PLWH had statistically significant elevations in the mean central-apnea index and the percentage of REM sleep stage, as well as reductions in the polysomnography-derived percentage of sleep stage 3 in PLWH relative to controls. When controlling study participants with a similar age and severity of SRBDs, this difference was still observed obviously. While we observed polysomnography-confirmed differences in central-apnea index between PLWH and controls, even though PLWH has achieved viral load suppression. Possible etiologies might be HIV virus does directly invade glia cells of neurons, it also triggers inflammation that may damage the brain and central nervous system [ 26 ], resulting in having more events in central-apnea and sleep-wake dysregulation [ 27 ], that would cause reductions in the percentage of sleep stage 3, more night dream, and higher arousal index. The certainty of evidence of associations of HIV infection and CSA remains unclear because of insufficient information and a limited number of polysomnography conducted in HIV population.

We identified three chief complains like nocturnal enuresis, traffic accident, and snore were significant frequency in PLWH with SRBDs compared to controls. As we know, enuresis is not just a nocturnal issue but a problem with sleep. The arousal threshold might be one of the major pathogenic factors in enuresis-nocturnal polyuria [ 28 ]. Our data also revealed the same situation. We noted that PLWH had higher mean arousal index when compared to matched controls, and tended to report higher percentage of nocturnal enuresis. In addition, we mentioned that a higher prevalence of traffic accident in PLWH than the controls. From previous literature, we have known that both SRBDs and HIV infection are associated with a significantly increased risk of traffic accidents due to repetitive hypoxia, inflammation, and sleep fragmentation resulting in sleepiness [ 29 ]. Recently, a cross-sectional study was conducted in professional drivers. The finding showed that professional drivers with HIV performed significantly poorer neurocognitive functions than those with cardiovascular diseases and healthy controls, especially in processing speed, attention and working memory [ 30 ]. It is worth to examine that the effectiveness of early detection and early treatment of SRBDs in PLWH on preventing the risk of traffic accidents.

Several previous studies reported that sleepiness, poor sleep quality, and depression were significantly increased in the PLWH as compared to the age- and sex-matched control subjects [ 5 , 6 ]. However, our study had the opposite of finding and found that a statistically lower sleepiness complains in PLWH when compared to similar severity of SRBDs control. One potential explanation for the differences in sleepiness complaints between the two groups may be considering the differences in sleepiness-related parameters such as the oxygen desaturation index (ODI). In addition, the lower mean ODI in PLWH rather than in matched controls may be due to the lower BMI and neck size. This argument was similar to a previous study [ 29 ]. They compared the association between several measures of breathing patterns during nocturnal and sleepiness. The study found that nighttime oxygen desaturation severity was highly related to sleepiness [ 29 ].

Additionally, we observed that subjective difference in snoring intensity was found between PLWH and controls. The fewer PLWH quantified their intensity of snoring compared to matched similar severity of SRBDs controls. However, the data in the self-rated intensity of snoring was inconsistency with the objective snore index from PSG. It means the subjective intensity of snoring in PLWH may underreport. Similar finding was found in women [ 31 ]. A two-year observational study found the presence of snoring and self-reported intensity of snoring is underreported in women [ 31 ]. Since intensity of snoring is highly related to severity of SRBDs in HIV [ 4 ]. This difference may be one of the barriers for PLWH to reach sleep clinics and sleep laboratories for polysomnography.

Our study has several limitations. First, our results have limited generalizability to the whole HIV population and all genders because this study only covered men living with HIV. Highlight the need for future research to include a more diverse participant demographic. Second, the small sample size might be difficult to the differences related to our study outcomes. Finally, this study was limited by the selection bias of willing to have sleep study subjects that might compromise our findings.

The findings from this study demonstrate that the central-hypopnea index in PLWH with SRBDs have significant difference from those of matched similar severity of SRBDs controls. We also noted that PLWH with SRBDs had lower percentage of slow sleep stage and higher percentage of REM sleep stage than matched controls. Early detected SRBDs and subtypes in PLWH to begin treatment for the underlying cause might reduce the risk of sleepiness-related traffic accidents.

Data availability

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request.

Abbreviations

American Academy of Sleep Medicine

apnea and hypopnea index

body mass index

cluster of differentiation 4

The Chinese version of the Epworth Sleepiness Scale

The Chinese version of Snore Outcomes Survey

central sleep apnea

the Chinese version of the Pittsburgh sleep quality index

highly active antiretroviral therapy

Hospital Anxiety and Depression Scale

human immunodeficiency virus

the International Classification of Sleep Disorders - third edition

National Health Insurance Research Database

obstructive sleep apnea

people living with HIV

rapid eye movement

sleep efficiency

sleep latency

total sleep time

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Acknowledgements

The authors would like to thank patients who participated in the study and sleep medicine center of National Cheng Kung University Hospital.

Y.C.Chen was in receipt of grants from the Ministry of Science and Technology, Executive Yuan of Taiwan (MOST 109-2314-B-006-009), Geriatric Medicine Translational Research Group supported by Higher Education Support Project of MOE, and Chi Mei Medical Center and National Cheng Kung University (CMNCKU 11015).

Author information

Yen-Chin Chen and Cheng-Yu Lin contributed equally to this work.

Authors and Affiliations

College of Medicine, National Sun Yat-sen University, Tainan, Taiwan

Yen-Chin Chen

Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan

Yen-Chin Chen & Nai-Ying Ko

Research and Development Committee, Taiwan AIDS Nurse Association, Taipei, Taiwan

Department of Electrical and Computer Engineering, University of Arizona, Tucson, United States

Chang-Chun Chen

Sleep Medicine Center, College of Medicine, National Cheng Kung University Hospital, National Cheng Kung University, Tainan, Taiwan

Wen-Kuei Lin & Cheng-Yu Lin

Department of Intensive Care Medicine, Chi Mei Medical Center, Tainan, Taiwan

Han Siong Toh

Institute of Clinical Medicine, College of Medicine, National Cheng Kung University, Tainan, Taiwan

Department of Health and Nutrition, Chia Nan University of Pharmacy & Science, Tainan, Taiwan

Department of Otolaryngology, College of Medicine, National Cheng Kung University Hospital, National Cheng Kung University, Tainan, Taiwan

Cheng-Yu Lin

No. 70, Lianhai Road, Gushan District, 80424, Kaohsiung City, Taiwan

Yen-Chin Chen & Cheng-Yu Lin

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Contributions

The authors also would like to acknowledge all of the authors participated in the conception of the analysis. Y.C.C., C.C.C., W.G.L., H.S.T., C.Y.L., and N.Y.K. participated in the study design. Y.C.C., C.C.C., W.G.L. and C.Y.L. participated in recruitment and data collection. Y.C.C., C.Y.L., H.S.T., and N.Y.K. engaged in the interpretation of results. Y.C.C., C.C.C., C.Y.L., and N.Y.K. wrote the manuscript.

Corresponding authors

Correspondence to Yen-Chin Chen or Cheng-Yu Lin .

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This study was approved by the Ethics Committees of National Cheng Kung University Hospital (No. A-BR-109-031). This research was performed in accordance with relevant regulations.

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Control cases in this study were obtained with permission from the Sleep Medicine Center.

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Chen, YC., Chen, CC., Lin, WK. et al. Variations in the sleep-related breathing disorder index on polysomnography between men with HIV and controls: a matched case-control study. BMC Infect Dis 24 , 456 (2024). https://doi.org/10.1186/s12879-024-09322-z

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DOI : https://doi.org/10.1186/s12879-024-09322-z

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A recently quenched galaxy 700 million years after the big bang, a magnetar giant flare in the nearby starburst galaxy m82, research analysis.

Endurance exercise causes a multi-organ full-body molecular reaction

Dad’s gut microbes matter for pregnancy health and baby’s growth

Genomics reveal unknown mutation-promoting agents at global sites

Cells destroy donated mitochondria to build blood vessels

Intel brings quantum-computing microchips a step closer, resilience lessons from ancient societies are still relevant today, how to stop students cramming for exams send them to sea, robust optical clocks promise stable timing in a portable package.

I strive to make the Great Barrier Reef more resilient to heat stress

Scientists urged to collect royalties from the ‘magic money tree’

Breaking ice, and helicopter drops: winning photos of working scientists

How i’m supporting other researchers who have moved to lithuania, i fell out of love with the lab, and in love with business, books & culture.

How volcanoes shaped our planet — and why we need to be ready for the next big eruption

Dogwhistles, drilling and the roots of Western civilization: Books in brief

The AI tuner

Las borinqueñas remembers the forgotten puerto rican women who tested the first pill, cosmic rentals, nature podcast.

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