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--- RESILIENCE OF PEOPLE LIVING WITH HIV/AIDS IN MALANG CITY, INDONESIA: A PHENOMENOLOGICAL STUDY

*Kumboyono1, Cathrine Theodora Sukotjo2 , Dini Prasetyo Wijayanti 3 , Yulia Candra Lestari4

1Department of Community Health of Nursing Science, Faculty of Medicine, Brawijaya University, East Java Indonesia, +6281805004106, publikasikoe@gmail.com

2Bachelor of Medicine, Faculty of Medicine, Brawijaya University, East Java Indonesia, +6282244096038, kirei.cathy.chan@gmail.com

3Master of Nursing Student, Faculty of Medicine, Brawijaya University, East Java Indonesia, +628563303302, dinipw@gmail.com

4Master of Nursing Student, Faculty of Medicine, Brawijaya University, East Java Indonesia, +6282132779122, yulia.candra91@gmail.com

ABSTRACT

Background: Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) is one of the continuously developing communicable diseases in the world.

Worldwide amount of people living with HIV/AIDS (PLWH) is currently increasing, not exceptionally in Indonesia. PLWHs fell into the state of crisis, which signifies the difficulties of living with chronic pathological conditions. Resilience is one unique phenomenon to be observed among PLWHs in Indonesia, which further reveals the results of current health management and expectations of PLWHs for better health programs.

Objective: This study aims to prove the mechanism of resilience in Indonesian PLWHs and the factors affecting that particular mechanism.

Method: This study is a qualitative phenomenological study. 27 PLWHs were selected from a primary health care in Malang City, East Java, Indonesia. Participants acquire

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various economic, social, and also diverge sexual orientation backgrounds. Participants were informed about the conduct of the research and consented to take part of the interview.

The Results: Diagnosis of HIV/AIDS signifies the beginning of stress and emotional distress, the spiritual reaction after being diagnosed is the state of crisis, and the coping mechanism and understanding of life as PLWHs is the definite signs of resilience.

Conclusion: PLWHs have a chronic progressive disease, induces the distinct mechanism of resilience in Indonesian society. Future health care and management of PLWHs is required to support and motivate this mechanism to guide PLWHs into more

comfortable and healthy lifestyle.

Keywords: resilience, HIV/AIDS, meaning of life, spiritual, health care INTRODUCTION

Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) is one of the continuously developing communicable diseases in the world, among other transmittable diseases occurring together with people suffering from

immunocompromised conditions, such as Tuberculosis. Worldwide amount of people living with HIV/AIDS (PLWH) is currently increasing with the significant incline in Asian countries, especially the South East Asia region. In Indonesia, the number of PLWH is in synergy with the increasing pattern of an Asian epidemic pattern of this disease, with the number of 300,000 new infections in 2015 (UNAIDS, 2016) [25]. Having suffered and diagnosed with HIV/AIDS, novel emotional stress and psychological disturbance are certainly experienced by PLWHs in general. As reported by Dahlui (2015) [7], PLWHs are one vulnerable community experiencing stress and emotional burden, together with physical discomfort they suffer. Another study also reported about the effects of stress and psychosocial burden suffered by Haitian children under diagnosis of HIV/AIDS.

Although there is the mechanism of resilience to chronic disease, those children were still under enormous pressure to survive the harmful pathological progress of HIV/AIDS and its opportunistic infection, and also because of lack of psychosocial support from their closest society (losing parents and caregivers since an early age) (Djeman, 2015) [8]

Biological mechanism of survival under the duress of chronic disease, such as HIV/AIDS or Tuberculosis, can result in two destinations. People living with chronic disease will experience the entire physical and emotional illness after persevering under the similar clinical manifestations for a long period of time. One destination results in emotional depression and loss of spiritual motivation that will lead to mortality (Saki, et al., 2015) (Liu et al., 2014) [24] [5]. The other destination is the mechanism of resilience itself, the distinct phenomena that eventually lead to survival while experiencing deteriorations of physical and emotional well-being (Fumaz, 2015) [6]. Qualitative phenomenological studies exploring the mechanism of the resilience of PLWHs and its other factors have not been the focus of researches in Indonesia. The purpose of this study is to deeply

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expose the experiences and factors regarding the survival of PLWHs living in Malang City, Indonesia, together with the other backgrounds influencing the outcome of this survival and resilience phenomena. The meanings of experiencing HIV/AIDS burden, physically and emotionally, and also the emotional responses of PLWHs are recorded and reported in this study as follows.

Design of Study

This study is a qualitative phenomenological study with the analytic descriptive

approach. This study obtained ethical health license from Ethical, Health, and Research Commission of Faculty of Medicine, Brawijaya University, Malang City by the number:

261/EC/KEPK/04/2014 and was held according to the Helsinki Declaration of 1975.

Population and Sample

The subjects of this study were 27 people living with HIV/AIDS (PLWH) in Malang City, East Java Province, Indonesia according to achieved saturation of data. Participants consist of 13 men and 14 women diagnosed with HIV/AIDS acquiring various

backgrounds of lifestyle, such as multiple sexual partners, transmission of HIV/AIDS from legal spouse, different sexual orientation (gay), and injectable drug users. Participants ranged from 25 to 34 years old who live in the areas of Malang city, Batu city, and Blitar municipality. Educational background of participants also ranges from primary school, junior high school, senior high school, and vocational school. Marriage status of

participants varies from being single, married, and widowed. Occupational backgrounds of participants are freelancers, private organization workers, and housewives.

Data Collection Instrument

Instruments used to analyze the data are the interview process and participative observation of researchers.

Data Analysis

Analysis of qualitative data was accomplished through creating transcript of interview recordings and notes during the interview. Manual analysis of the data was

accomplished according to Colaizzi Method (Miles & Huberman, 1992; Streubert &

Carpenter, 1999) [7], [8]. The results of the analysis are the decisions of keywords, categories, and themes and subthemes of qualitative variables of the study.

RESULTS

According to the results of qualitative analysis of data, the mechanism of the resilience of PLWHs in Malang city can be divided into two phases, crisis phase and survival phase.

The crisis phase can be described by examining emotional response and psychosocial changes of lifestyle acquired by PLWHS. Meanwhile, the survival phase is explored by

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asking about the meanings of life of PLWHS (changes in spiritual pattern and future arrangements). Each theme is discussed thoroughly and described qualitatively

according to specific sub themes. Emotional Response of People Living With HIV/AIDS (PLWH) The emotional response of people living with HIV/AIDS (PLWH) is described through a single sub theme, psychosocial response. Psychosocial Response The psychosocial response of PLWH after being diagnosed of suffering HIV/AIDS can be divided into two sub themes, anxiety psychological response and social response from the environment.

Anxiety, Psychological Response Anxiety, psychological response rose when participants consider the uncertainty of their lives which may end in morbidities and mortalities.

Anger is also one of emotional responses after participants get through of their initial shock of being diagnosed with HIV/AIDS. Some of them accuses God for their sickness and acquire deep enmity against those of whom they perceived responsible of

transmitting the disease, which are admitted by them through these comments: “Now I am afraid, anxious, sometimes that my sickness will result in my being sick all my whole life or die someday. I think God no longer loves me, I had this period of being angry with God, but now I realized and widely opened my heart… I try taking the advantages of my situation….

I return all the things I suffer for God, God is the one who decides me having this sickness, God will be the one who heals me.“ (P5) Social stigma arises as an impact of wrong perception of society from people suffering from HIV/AIDS and its transmission, in the forms of exposing to society embarrassment, labelling or prejudice, social

isolation, and fear of being isolated and shunned by society. Whereas other participants may also suffer from discrimination, several others admitted that they also received acceptance from people living surrounds them, depending on the openness and educational level of their communities.

These phenomena can be observed from several participants’ comments, as follows: “I became the major conversation of people… both from my own family and the society…

many say that it’s the burden I have to bear alone as a consequence of what I did. If I want to work, I will mostly be rejected because of this disease. But luckily, now there’s no pressure from society, in this area, it’s no longer a taboo subject.“ (P21). Meaning of Life of People Living with HIV/AIDS (PLWH) Meaning of life of PLWH can be divided into these following two sub themes, changes of spiritual pattern and future arrangements.

Changes to Spiritual Pattern Changes of spiritual meaning experienced by participants happen in the form of spiritual closeness with God through surrendering all to God, repentance, and diligence of prayers and worship dedication. These phenomena can be observed through these following comments: “I don’t want to grief for too long…

because everything happening right now is God’s will, if God gives me the disease, God will be the one giving me medicine. Now I’m diligent in prayers, before my sickness, I rarely do that. I can now read the Quran recently compared to my previous inability.”

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(P16).

Future Arrangement Planning for the future is the form of PLWH’s awareness in learning life lessons from their personal experiences by maintaining health and future

arrangements for their family. Maintaining health is one form of participants to survive the declining immune system through behavior and beliefs to always be healthy and changing their lifestyle into a healthy one. This phenomenon is described through these following comments: “I want to show that though I am positively suffering HIV, I can live healthily without medical problems. I change my lifestyle, change all of them….

All the bad behavior of my past I have left, such as drinking, doing drugs, multiple sex partners, I have left all of it.” (P23). Future hope for the family is participants’ wishes for the continuation of their families, future of their children, and happiness of their parents and relatives to redeem their previous deeds. This phenomenon can be observed

through this following comment: “What I fear is; it is acceptable if it is only me who suffer the disease… what about my kids, who will take care of them if I die… I have to stay healthy for my children.

Besides, I want to get work again; I want to please my parents…. My parents need more attention now.” (P25). DISCUSSION The stadiums of people suffering under chronic disease can be categorized into three consecutive phases. The first phase is signified by the beginning of emotional and physical struggle after having been diagnosed with a certain critical disease, such as HIV/AIDS. The people acquiring one particular severe disease later entered the critical phase, which is also the beginning of their mental and physical experiences as people under the pathological burden of chronic and worsening physical manifestations[13].

Under the duress of discomfort and pain for a long period of time, together with the heavy burden of mental and emotional pressures, people with chronic disease will finally arrive at the destinations already predicted for them. One destination is surely

morbidities and irreversible deteriorating emotional condition, which eventually leads to mortality. The other destination is one interesting phenomena to behold in itself, in which people living with HIV/AIDS (PLWH) and others suffering from chronic progress of disorders can persevere and acquire the physical resistance needed to counter the destructive progress of the disease itself. This phenomenon is called resilience and is one distinctive topic to be discussed based on the results of this study.

According to the interview results, all of the participants agree with the notion of having suffered enormous negative emotional changes regarding their diagnosis of HIV/AIDS.

Participants admitted that some of them were hardly able to control the anger and hatred they had after first being informed about their actual clinical conditions. They perceived people in their close acquaintance as ones who were responsible for their clinical conditions, and this understanding leads to their harmful motivation to hurt innocent victims to justify the bad deeds others have done by making them contracting the disease in the first place. Others participants react in a different way by expressing

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great sadness, anxiety, and depression regarding their bleak future and low rate of survival under the rapid progressive manifestation of the disease.

Based on these results of emotional and psychosocial reactions of participants, it can be inferred that one significant negative event relating to their well-being can deflate positive perceptions the participants’ acquire about themselves. The emotional and physical stressors they receive after being diagnosed with HIV/AIDS signify the beginning of their long struggle and journey in reaching the critical phase that all people with chronic disease will eventually reach. Those participants will be processed both physically and mentally through the discomforts and the state of being constantly uncomfortable with themselves, which is specifically induced by the harmful particular stressor that is HIV/AIDS.

Having been diagnosed with HIV/AIDS, initially participants will reveal a great distrust and absolute blame to God and other spiritual system of belief in their society,

according to their upbringing. As most Indonesians consider spiritual devotedness to God is the absolute duty in their private and public lifestyle, it is generally perceived as negative wrongdoing by blaming God for the disease and discomfort the participants have to pass through in life. PLWHs in this study have a difficult time reconciling their sufferings with the goodness and righteousness of religious beliefs. This also adds to their emotional and physical burdens, which further leads to anxiety and depression.

This emotional and mental state of PLWHs are one distinctive value of being in the critical phase of suffering from chronic disease, and also has the role as one determining factor of the final destinations of the participants’ well-being. The final destinations of people under chronic disease, as mentioned above, can manifest in mortalities due to participants’ inability to cope with long and strenuous emotional and physical burden.

However, one interesting phenomenon called resilience to chronic disease can also exist and be presented in the final stages of participants’s struggle.

According to this study, all participants react in a positive way regarding their

experiences and meanings of life acquired by contracting HIV/AIDS. Most participants agree to repent and improve their spiritual lifestyle by being more vigilant in prayers to God. Participants also admit that they act more carefully after being diagnosed with HIV/AIDS to preserve the rest of their survival years and also to prepare economically and emotionally for their families.

These are positive signs in the final destinations of PLWHs and can be further

categorized into the resilience expected to be found in people under chronic disease.

The resilience phenomena of PLWHs found in this study are in conjunction with the results of other previous studies about PLWHs. According to one study held in Haitian child’s community suffering from HIV/AIDS, the participants admit that they suffer the enormous stressor of being diagnosed with HIV/AIDS, which is in synergy with the beginning process of HIV/AIDS for participants of this study.

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The Haitian children also revealed the emotional and mental struggle of having a negative social stigma from the environment which is worsened with the struggle of coping with all the negative perceptions alone without their caregivers or parents to support them[9]. CONCLUSION PLWHs have a chronic progressive disease, induces the distinct mechanism of resilience in Indonesian society. Future health care and

management of PLWHs is required to support and motivate this mechanism to guide PLWHs into more comfortable and healthy lifestyle.

CONFLICTS OF INTERESTS

The authors declare there are no conflicts of interests regarding the funding and publication of this journal.

ACKNOWLEDGEMENTS

The author is grateful for the support of the Directorate General of Higher Education, Ministry of Culture and Education, Republic of Indonesia in funding this public health research.

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1% - https://journals.openedition.org/rsa/1832

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https://www.researchgate.net/publication/328141607_Effect_of_counseling_based_on_PL ISSIT_model_on_sexual_function_of_HIV-positive_married_women

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<1% - https://econpapers.repec.org/article/plopone00/

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8.5