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Burning Issue of HIV/AIDS: A Psychosocial Study

Ankur Barua 1,2*, Yasoda Sharma 3, Mary Anne Basilio 4
  1. Sikkim-Manipal Institute of Medical Sciences (SMIMS), Sikkim, India
  2. International Medical University, Malaysia
  3. Sir Sunder Lall Hospital, Beneras Hindu University, Varanasi, Uttar Pradesh, India
  4. Saint Mary’s University, Bayombong, Philippines
Corresponding Author: Dr. Ankur Barua Senior Lecturer; Department of Community Medicine, International Medical University (IMU), No. 126, Jalan Jalil Perkasa 19, Bukit Jalil, 57000 Kuala Lampur, Malaysia Email: [email protected] | Mobile: +60122569902, +60105354023
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Abstract

Background: HIV/AIDS is associated with psychological problems, which may arise due to social stigma attached to the disease.

Materials and Methods: A Cross-sectional study was conducted for one year during 2007 among 150 adult individuals (75 males & 75 females) suffering from HIV/AIDS to study depression and psychosocial aspects associated with the disease. An interview schedule was developed by the investigators to study the social problems in individuals with HIV/AIDS and Mastering Depression in Primary Care Version 2.2 instrument was used to assess depression. The participants were selected from HIV/AIDS clinic in Department of Microbiology at I.M.S. in Beneras Hindu University of Varanasi, Uttar Pradesh and in the general population of Sikkim residing within 5 Kilometres radius from the Sikkim Manipal University of Health, Medical and Technological Sciences by using the snowball technique along with quota sampling for gender. Data was tabulated and analyzed by using the Statistical Package for Social Sciences (SPSS) version 10.0 for Windows. Chi-square test was applied for comparisons. Here, a p-value <0.05 was considered as statistically significant.

Results: All participants with HIV/AIDS in this study, tried to maintain secrecy about their disease although only 26.67% of them faced social stigma. Majority (40%) of the respondents with HIV were avoiding social gathering. It was also observed that majority (40%) of them were rejected by their friends and relatives when they came to know about the disease. It was found that all respondents infected with HIV/AIDS were suffering from depression. Females showed higher level of depression than males. The major aspects of depression were apathy, sleep disturbance, pessimism, fatigue, irritability, social withdrawal and dejection.

Conclusion: This study revealed that HIV/AIDS infection is both a medical as well as psychosocial issue. In order to provide the most effective care, the care-givers of HIV/AIDS patients should recognize that both these physiological and psychological factors in HIV/AIDS are of equal importance.

Keywords

Stigma, secrecy, social, depression, psychological
Running Title
“PSYCHOSOCIAL STUDY ON HIV/AIDS”

INTRODUCTION

Management of HIV/AIDS is challenging for physicians because of the rapidly changing treatment modalities. Apart from being infectious and potentially fatal, HIV/AIDS is also associated with social stigma. Hence, the infection with Human Immuno-deficiency Virus (HIV) and the subsequent development of Acquired Immuno-deficiency syndrome (AIDS) are often associated with various psychological problems.1,2
Most patients with serious, progressive illness confront a range of psychological challenges, including the prospect of real and anticipated losses, worsening quality of life, the fear of physical decline and death, and coping with uncertainty. Because of the risk of transmission, Behaviour Change Communication (BCC) strategies are adopted for changing the sexual behaviour and reduction of substance use, However, these are not easily modifiable.1,2,3
Hence, it is necessary to determine the psycho-social problems of the people living with HIV/AIDS. It is also essential to support those suffering from HIV/AIDS, both psychologically and socially and help them to develop better coping skills.1,2 Since, there is no medicine which can completely cure HIV/AIDS till date; the only option left is to prevent HIV/AIDS by generating public awareness. This can also help in dispelling the gloom of social stigma.
HIV/AIDS Infection and the subsequent progression of this disease need a broader range of personal experience to negotiate. Change in the health of people with HIV/AIDS demands constant adaptation. A patient develops new type of coping as the disease changes. At the same time, the patient’s condition may trigger a variety of reaction from others, such as family members, relatives, neighbours, employers, co-workers and other helping medical and paramedical professionals.1,3
With this background, a study was undertaken to identify the psycho-social issues and challenges of the people living with HIV/ AIDS. The information generated from this research can help the primary care physicians to address these issues in a better manner. This will also help them to decide when they should consider involving mental health specialists and other support services.

Objectives

1. To study the psychosocial aspects of individuals with HIV/AIDS attending HIV/AIDS clinic.
2. To determine the presence of depression among these individuals with HIV/AIDS.

Hypotheses of this study

1. The patients often try to maintain secrecy about their disease.
2. They face social stigma.
3. The patients avoid maintaining social relationship and become isolated.
4. Depression level among female patients is comparatively higher than their male counterparts.

Materials and Methods

A Cross-sectional study was conducted for one year from 1st January to 31st December 2007 among 150 adult individuals (75 males & 75 females) suffering from HIV/AIDS to study depression and psychosocial aspects associated with the disease. The participants were selected from HIV/AIDS clinic in Department of Microbiology at I.M.S. in Beneras Hindu University of Varanasi, Uttar Pradesh and in the general population of Sikkim residing within 5 Kilometres radius from the Sikkim Manipal University of Health, Medical and Technological Sciences. Quota sampling method was applied to include equal number of men and women in the study sample. The respondents within each gender group were selected by using the Snowball technique.
Study Instruments
An interview schedule was developed by the investigators to study the social problems in individuals with HIV/AIDS (standardized & validated by specialists) and depression was assessed using Mastering Depression in Primary Care4,5 Version 2.2 instrument which was developed and previously validated by the World Health Organization (WHO). This instrument was translated into Hindi by the researchers and back-translated into English by another expert, not acquainted with the original versions. The back-translation was subsequently compared with the original version by a psychiatrist for conceptual equivalence of the items.
Ethical considerations
This study was approved by the Research and Ethical committees of the Beneras Hindu University of Varanasi, Uttar Pradesh and the Sikkim Manipal University of Health, Medical and Technological Sciences, Sikkim, India. Informed written consent was obtained from every participant prior to the data collection. Confidentially of the information obtained from the participants was maintained throughout this study.
Data Collection Procedure
After informed written consent was obtained, all the participants were separately interviewed by the investigators in isolation either in the clinic or community set-up to obtain authentic data for this research. All the information provided by these participants was strictly kept confidential.
Data Analysis
Data were tabulated and analysed by the Statistical Package for Social Sciences (SPSS), version 10.0 for Windows. Findings were described in terms of mean, standard deviation and proportion. Comparison was done by using the chi-square test wherever applicable and a p-value <0.05 was considered as statistically significant.

Results

This Cross-sectional study included 150 adult individuals (75 males & 75 females) suffering from HIV/AIDS to recognize the psychosocial aspects and depression associated with the disease. The mean age of participants in this study was 41 years (SD=3.7). The mean age of females was 38 years (SD=3.2) and that of males was 44 years (SD=4.2).
Hypothesis-1: The patients with HIV/AIDS often try to maintain secrecy about their disease
This study revealed that all the participants made their level best effort to maintain secrecy about their HIV status. They wanted to hide their disease even from their near and dear ones and preferred to suffer both psychologically and physically on their own due to the fear of rejection.
Hypothesis-2: The patients with HIV/AIDS face social stigma
It was observed that only 26.67% of individuals with HIV/AIDS had faced the social stigma. Though this was not a significantly high percentage, but we need to keep in mind that majority of the respondents did not reveal their HIV status to anyone other than their nearest ones due to the fear of social isolation.
Hypothesis-3: The patients with HIV/AIDS avoid maintaining social relationship and become isolated
This study reported that a high percentage of individuals, having HIV (40%), had avoided social gathering. People who were infected by HIV often feared that there was a high chance of revealing the disease before others if they had attended any social gathering. The friends and relatives rejected 40% of the respondents after they had revealed their disease.
Hypothesis-4: Depression level among female patients is comparatively higher than their male counterparts
It was found that every respondent who has been infected by HIV/AIDS was more or less suffering from depression. This prevented them from seeking treatment on many occasions. Female patients with HIV/AIDS showed significantly higher level of depression as compared to their male counterparts (Chi-quare=12.09, df=1, p-value=0.0001*). This study also explored the various aspects of depression in HIV/AIDS patients such as apathy, sleep disturbance, pessimism, fatigue, irritability, social withdrawal, dejection which were all found to be significantly associated with depression.

Discussions

It is difficult to discuss the traumatic experiences to which HIV infected individual are subjected. Tremendous physical and psychological changes take place in the body and mind when the persons having HIV/AIDS are first told about their disease. They refuse to accept the real fact due to social stigma, and they are not ready for the treatment too. The society starts discriminating the people with HIV/AIDS due to wrong notion held by the people about this disease. This not only affects the individual, but the family as well. These factors have a great influence on the behaviour of the patient and the patient starts remaining isolated. Due to the feeling of dejection, worthlessness and hopelessness they become depressed. Lack of knowledge about the disease, misconception and false beliefs often pose vicious obstacles for these patients.2,3
This study revealed that all the participants made their level best effort to maintain the secrecy about their HIV status. It was earlier reported that many people, who acquire HIV/AIDS, hide their disease even from the near and dear ones and prefer to suffer both psychologically and physically due to the fear of rejection.1,2,3,6
Though this study revealed that only 26.67% of individuals with HIV/AIDS faced the social stigma, but we need to keep in mind that majority of the respondents did not reveal their HIV status to anyone other than their nearest ones. There is a high possibility of facing social stigma by the patient, once the other family members and the community comes to know about his disease.3,6,7,8,9 Majority of the common people consider that HIV/AIDS is more contagious than any other disease and there is no cure. This misconception in the society provides a fertile ground of illogical fear resulting in discrimination.3,8 It was earlier reported by Kelly (1996)7 that although AIDS is the same contagious as any other disease, but the patient faces social stigma, which is not only unethical, but also can result in an increase in the spread of the disease.
A unique aspect of HIV/AIDS is the secrecy and isolation that accompanies it. Despite improvement in understanding of HIV/AIDS, those who are infected continue to face possible fear, rejection and prejudice once the diagnosis becomes known. Adults who are infected by HIV/AIDS may not immediately like to reveal their disease condition to their family members, spouses, partners or children. This information is also revealed to the friends and community members at a much later stage. Cultural issues may impact communication patterns, attitudes towards HIV infection and willingness to access social and psychological support system. The stigma associated with HIV/AIDS and the urgency to keep one’s status a secret from family, friends and co-workers can lead to feelings of social isolation and depression.3,8,9
This study reported that every respondent who was infected by HIV/AIDS was also suffering from depression and this often prevented them from seeking treatment. Female patients with HIV/AIDS showed significantly higher level of depression as compared to their male counterparts. HIV/AIDS has a profound impact on women, both as an illness as well as a social and economic challenge. Lack of status within the family and the society highlights the vulnerability of women to HIV/AIDS infection and other consequences of the disease. Social stigma attached to HIV/AIDS can subject the women to discrimination, social rejection and other form of violation of their rights.3,10,11 Hence, it is important that all HIV/AIDS patients should be screened at regular intervals for identifying depression at an early stage.

Conclusion

Majority of the participants with HIV/AIDS in this study were rejected by their friends and relatives when they came to know about the disease. Hence, they tried to maintain secrecy about their disease and were avoiding social gathering. All respondents infected with HIV/AIDS were suffering from depression and majority of them were females. It is advised that HIV/AIDS patients should be screened at regular intervals for identifying depression at an early stage. This study revealed that HIV/AIDS infection is both a medical as well as psychosocial issue. Thus, both the physiological and psychological factors are of equal importance which needs to be understood in depth by the care-givers while dealing with HIV/AIDS patients. In order to provide the most effective care, it is very important for the rehabilitation professionals to recognize the major psychological issues that appear at different stages of HIV/AIDS infection.

Conflict of Interest

None declared.

References

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6. Lee S, Ralph H, Knowledge about AIDS among adolescents, Am J Public Health. 1987:77(6):720-2.

7. Kelly JA, Lawrence JSS, Smith S, Hood HV, Cook DJ. Stigmatization of AIDS Patients by Physicians. American Journal on Public Health. 1987:77(7): 789-91.

8. Nichols S. Psychosocial reactions of persons with acquired immunodeficiency syndrome. Ann Intern Med. 1985; 103: 765-7.

9. Stephenson J. Twenty years after AIDS emerges, HIV's complexities still loom large. JAMA. 2001; 285: 1279-81.

10. Dilley JW, Ochitill HN, Perl M, Volberding P. Findings in psychiatric consultations with patients with acquired immune deficiency syndrome. Am J Psychiatry. 1985; 142: 82-6.

11. Perry S, Jacobsberg L, Card CA, Ashman T, Frances A, Fishman B. Severity of psychiatric symptoms after HIV testing. Am J Psychiatry. 1993; 150: 775-9.
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