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Search for a cure: narratives of Thai family caregivers living with a person with AIDS
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Search for a cure: narratives of Thai family caregivers living with a person with AIDS Kittikorn Nilmanata,*, Annette Streetb a
Department of Medical Nursing, Faculty of Nursing, Prince of Songkla University, Had Yai Songkhla 90112, Thailand b Cancer & Palliative Care Studies, La Trobe/Austin Health Clinical School of Nursing, PO Box 4445, Heidelberg, West Victoria 3081, Australia
Abstract Facing an incurable prognosis Thai families search for a cure for AIDS using all possible means available to them. This paper reports a longitudinal narrative case study of eight family caregivers caring for a relative with AIDS in rural Southern Thailand. The paper demonstrates how the caregivers living with a person with AIDS made sense of illness episodes, and how they chose and evaluated particular treatments and care. Caregivers moved between modern medicine, traditional/folk medicine, supernatural healing rites, religious performances, and home remedies in their search for a cure. The findings indicate that a more holistic and palliative approach is needed toward AIDS care. r 2003 Elsevier Ltd. All rights reserved. Keywords: Thailand; AIDS; Family; Traditional/folk medicine; Supernatural healing rites; Thai religious performances
Introduction Thailand’s HIV/AIDS epidemic began in 1984 and dramatically increased throughout the following years. By October 2001, the cumulative number of AIDS cases was estimated at 181,484, with an estimated 131,461 people currently living with AIDS in Thailand (Division of Epidemiology Ministry of Public Health, 2001). Although some anti-retroviral drugs are now available, the efficacy of such treatments is still inconclusive. Moreover, people with AIDS who are poor and live in developing countries, including Thailand, have little access to these anti-retroviral drugs. Due to limitations on the number of available inpatient beds, the Thai government launched a home and community care program for people with AIDS where the family was expected to play a key role in taking care of AIDS sufferers. However, we have little knowledge about how these families understand AIDS and the health approaches they pursue in the hope of a cure. *Corresponding author. Tel: +66-74-286521; fax: +66-74212901. E-mail address: [email protected] (K. Nilmanat).
This paper reports findings from a narrative case study examining the experiences of family members caring for a relative with AIDS in rural Southern Thailand. The search for a cure was the dominant theme in the narratives of these family caregivers. In this paper, we explore the effects of this search on the meaning making process. We also examine the construction of health seeking behaviors, the way that the caregivers made sense of illness episodes, and how they chose and evaluated particular treatments and care.
Illness narratives Illness in general, and chronic illness in particular, has been interpreted as a disruption of an ongoing life (Bury, 1982; Hyden, 1997; Radley, 1999; Williams, 2000). Charmaz (1983, 1987, 1999) points out that chronic illness leads the ill person and their family to the recognition that their old patterns of living are no longer useful and they need to reconfigure their lives to take account of the losses and changes chronic illness brings. A key strategy to reconstruct their lives is through repetition of their stories about the illness experience
0277-9536/$ - see front matter r 2003 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2003.12.003
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(Bury, 2001; Charmaz, 1999; Good, 1994; Hyden, 1997; Williams, 1984). Storytelling or narrative has been described as a powerful form of expressing suffering and experiences related to suffering in a particular social and historical context (Bury, 1991, 2001; Charmaz, 1999; Frank, 1992; Hyden, 1997; Williams, 1984). Hyden (1997) highlights that illness narratives offer patients an opportunity to reframe their experiences to construct a new context and to fit the illness disruption into a temporary framework. Narrative researchers point out that modern medicine splits the diseased body from the lives of the ill person and silences their everyday experiences (Bury, 2001; Charmaz, 1999; Frank, 1995; Hyden, 1997; Kleinman, 1988; Radley, 1999). Therefore in recent illness narrative studies, narrative researchers have attempted to advocate for the ill to reclaim their voice and to influence health care professionals to listen to their clients’ stories being told through the diseased body.
Method A longitudinal narrative case study was conducted over a period of 8 months in Songkhla Province in Southern Thailand. Eight caregivers were recruited to the study through an AIDS clinic at a large hospital and through admissions to two medical wards in a tertiary level teaching hospital. People with AIDS were asked if their primary caregiver was aware of their AIDS status and if they would give permission for the researcher to approach the caregiver to participate in the study. Informed consent was obtained from the patients and caregivers. Pseudonyms were used to protect both patients’ and key caregivers’ confidentiality. The Faculty of Health Sciences Human Research Ethics Committee of La Trobe University approved the study. Regular visits were conducted to each family for approximately 6 months with the fieldwork conducted from October 1999 to May 2000. However, field visits also included the HIV clinic at the outpatient department of a tertiary hospital, an inpatient medical unit, and a Buddhist temple providing alternative care for people with AIDS. In this study, although a primary caregiver was selected as the key informant, other family members were also sources of data. Family members joined in the conversations to share their own stories. The data from other family members revealed their concerns and how these concerns shaped the experience for caregivers and their significant others. Therefore, data from other family members offered us an opportunity to knit their stories together. The data collection methods included interviews, participant observation, and extensive field journal notes. Four forms of interviews were used: structured demographic data, semi-structured interviews, focused
conversations, and mutual dialogue. Demographic data of the patients and caregivers, as well as their illness history were collected in a structured interview format. Semi-structured interviews were mainly conducted during the initial stage of the relationship in each case. When the relationship developed, the patients and caregivers became active and started telling their own stories. As a consequence of this, the form of interviews changed to ‘focused conversation’. Through focused conversations, the caregivers were asked to describe their experiences or suffering. In addition, probes and questions were asked to pursue their narratives further. When the relationship with the caregivers achieved a mutual level of trust, the interviews changed to more informal conversation. We classified this kind of interview as ‘mutual dialogues’. Caregivers talked about their concerns, other people and the everyday situations surrounding them. Stories were shared. In this sense, personal stories were used as a tool to lead the dialogic and reciprocal exchange (Aranda & Street, 2001). Data from such ‘mutual dialogues’ provided us with opportunities to better understand how caregivers made sense of their situation and provided the background to the cases. The interview process was dynamic and shifted back and forth among these three forms. Interviews along with other methods of data gathering allowed us to construct holistic cases. Participant observation was another key method to gather comprehensive and exhaustive information about each case (Corbetta, 2003). In this study, the main focus of observation was on the ways caregivers dealt with and participated in their social world, such as what they talked about concerning their belief about health, life, and death along with what they did to support this belief. We witnessed how the caregivers managed and cared for patients and also observed what kinds of medicines and remedies caregivers provided for the loved one. As the first author was a Thai nurse who spent a relatively long time with these families, she did develop close relationships with them. She joined in their conversations and in some family’s activities and also observed the many personal issues surrounding their lives. These observations enabled her to get a feel for the natural flow of events (Taylor, 1991). Almost every day in the field, the first author spent at least 1 hour writing a field journal. The field journal consisted of detailed descriptions of conversations and situations along with the struggles, feelings, thoughts, and reflections of the observer. Reflection upon the field journal enabled us to begin to comprehend the complexity of the inter-subjective meaning hidden within the context (Street, 1995). Data analysis was started simultaneously with entry into the field. After completing fieldwork, the transcriptions and field-notes of each case were read several times in order to develop and generate codes leading to
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emergent categories. A comparative table of these eight cases was constructed in order to see the similarities and diversities of each case. These analytical approaches to each case helped to identify an overall pattern of complexity and the appropriate causal links to be analyzed (Yin, 1994). Narrative analysis was used to analyze these illness stories. Frank (1995) suggests that to analyze stories, researchers have to think with the stories, not about the stories. He describes the terms ‘‘to think with stories’’ as ‘‘to experience it affecting one’s own life and to find in that effect a certain truth of one’s life’’ (Frank, 1995, p. 23). The final stage of the analysis occurred when we combined the cases and structured them into theorized narratives.
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behaviors. This was particularly evident in the early stages of the illness, reported in this paper, when caregivers were optimistic despite medical prognoses. They exerted themselves to help their loved one return their health to normal. The search for a cure was central for caregivers of patients on or off anti-viral drugs. This hope prompted caregivers to try various kinds of therapeutic treatments that were informed by competing systems of thought and views about health. These caregivers searched for a cure using all possible means: therapeutic treatments in Western/modern medicines, traditional medicines, religious performances and supernatural healing rites. We will now consider how these varied systems of thought constructed the way family caregivers thought and acted in sets of illness beliefs.
Translation issues Faith in Western/modern medicine In the preparation stage the protocol and ethics documentation were written in English and translated into Thai. This translation was then independently backtranslated to ensure accuracy and fidelity to the original intent. During the analysis process, the interviewed transcripts were listened to as the original source of data. This process allowed us to keep the feeling of the data. After developing and generating core themes and emergent codes, the first author translated the caregiver’s accounts into English. The rationale for doing the translations herself related to an ethical concern about the confidentiality of the data and the need to retain the contentualized meanings. Profile of the patients and caregivers Eight families with AIDS agreed to participate in this study. Four men and four women with AIDS agreed that their carers could participate in the study. All were heterosexual and only three patients had access to any anti-retroviral therapy. Significantly, all caregivers were women who had been assigned to take responsibility for the care of the patients. The caregivers ranged in age from 27 to 61 years of age. One caregiver had a Bachelor of Nursing, two women had completed grade 12 and five caregivers had finished their study at grade 4 or lower. Two of the caregivers were wives who were currently unemployed and had tested HIV positive from contact with their husbands. The remaining six caregivers were mothers of the patients. Of the six mothers, four of them continued working in cottage industries whilst they provided care.
Findings Evidence from this study indicated that a search for a cure strongly influenced the caregivers’ health seeking
Western or modern medicine was the dominant approach adopted by all caregivers. Thailand has wholeheartedly endorsed and adopted Western medicine as the basis for its health care. When there were no externally visible symptoms of AIDS evident on the body of their loved ones, caregivers assumed that it meant no disease was present. Caregivers described how when their loved one was feeling unwell they looked to a doctor who could use technology to identify the invisible signs of AIDS inside the body. The efficacy of modern medicine and technologies, together with respect for the knowledge of health professionals, confirmed their belief that the hospital was the best place to ‘cure’ disease. Caregivers were reliant on the doctor to confirm or disconfirm their own observations. With the exceptions of two cases all patients had a regular appointment with a doctor at least once a month. In addition, the valuing of medical knowledge structured the way caregivers made decisions concerning the place where ‘cure’ and ‘care’ should be provided. As one caregiver elaborated on this issue when asked about taking care of a patient at home: If we want him to get better, he has to stay in a hospital. It is better to be close to doctorsy Because when he has symptoms, we will tell a doctor. The doctor will prescribe medicines for us. If he is at home, we will not know what kind of medicines that we should provide for himy because patients don’t have this kind of knowledge. So they have to depend on doctors. They (doctors) asked us to care for the patient at home, but relatives are not doctors. When the patient has symptom, what kind of food or medicine will we provide for him or her? We are not doctors, so we cannot care for him at home, can we?y (At a hospital) the doctor will visit us every morning and ask us about symptoms. If he has a sore mouth, the doctor will prescribe medicines for us.
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If he has fever, the doctor will provide anti-pyretic drug for him. For anti-pyretic drug, it is not a problem (for us too) (but) we sometimes don’t know (that he had a fever) because we don’t have a thermometer. Although we touched his head, we might not know that he had a fever. If he is in a hospital, it will be convenient. Doctors and nurses manage medication for us. At the time of the study the caregivers were not able to access physician care at home so they were forced to resort to hospitals for care, even when medical advice suggested that there was little that could be done in hospital. The narratives demonstrated that caregivers expected that the biomedical knowledge and technologies could cure their loved one. When symptoms were present they would take the person to hospital to be close to doctors and nurses. When symptoms appeared to abate, caregivers felt comfortable when doctors prescribed medicines for the patients to take home. They indicated that medicines were the doctor’s agent. At home, caregivers could encourage the patient to comply with the medication regime in their anticipation of a cure. Traditional/folk medicine Although all caregivers initially reported faith in modern medicine to cure their loved one, as the disease progressed they looked to traditional or folk medicine as an additional source of curative hope to biomedicine. Unlike modern medicines, people found out about the efficacy of traditional/folk treatments through word of mouth. However, as AIDS is a stigmatized disease, caregivers in this study indicated that they had to be vigilant and not to be obviously interested in any neighborhood discussion on the efficacy of AIDS treatments. At the time of this study, no traditional or folk healers or institutions had obtained government approval for AIDS treatments by the Ministry of Public Health. Six of the eight cases sought folk treatments at various stages. These caregivers used this traditional sector intermittently. Some caregivers were still vigorously trying out traditional remedies in a desire for a cure, whilst others felt uncertain about turning from medical treatments to traditional medicines. A common form of folk medicine that caregivers sought was ‘ya mor’ or ‘ya-tom’. ‘Ya-mor’ was basically made from roots of trees and mixed with herbs. To prepare this ‘ya’ or medicine, a client has to put a mixture of tree roots and leaves or herbs in a pot (or ‘mor’) and boil (or ‘tom’) it. Folk healers commonly were monks or laypersons who lived in the local community. One caregiver reported efficient effects from folk treatments and intended to continue it.
We provided ‘ya tom’ for her tooy We boiled ‘ya mor’ for her. This ‘ya’ is well known. This ‘ya tom’ is specific for this diseasey It is specific for AIDS. Her friends have recovered because of taking it. So they told us. They took about 4 pots. They suggested that she take it. A man who lives over there recovered. Previously, his hair was falling out. Now, he is healthy. I don’t know how it cures, but he has recovered. I thought it was worth trying because someone else became better from taking it. (Tan, caregiver) San’s (the patient’s) family was hopeful that the ya mor could provide a cure despite the medical prognosis. Notably, the caregiver accepted the medical diagnosis of AIDS and was not concerned with an explanation of AIDS in folk terms or the process of healing. Tan was only interested in the curative powers (‘‘I don’t know how it could cure, but he recovered’’). The caregiver evaluated the worth of traditional treatments by visible symptomatic improvement and subjective feeling. In other words, if the patient appeared to be less obviously symptomatic then the caregiver trusted this subjective evidence over objective and scientific methods. Food prohibitions were also invoked to prevent the illness from inhibiting the efficacy of modern medicine and the healing process. In general, caregivers learnt such home remedies by word of mouth from one generation to another. They also learnt remedies from their real experiences when they encountered illness and generalized this new folk knowledge to care for the patient. Nong’s (patient) main symptom was diarrhea. Klub (caregiver) noticed that Nong had diarrhea and became bedridden on each occasion after she had eaten foods at a cremation. Finally, Klub concluded that Nong’s disease was aggravated by cremation food. Klub spoke of her experiential learning: Klub: We went to a cremation. After we came back, she got sick immediately. So I thought that the cremation was injurious with this disease. I experienced it 3 timesy(silence)y KN: I still don’t understand. You mean that Nong went to a cremationy Klub: then, yhow can I say? They provided a bowl of hot curry that was just taken from a stove. I told her not to take it because I had learned from a previous cremation that we participated in. (After taking it,) she got worse immediately. It (a cremation) is injurious for this disease’. I had learned from experiencing on these occasions. After the second cremation that she participated in she got worse. She had vomiting and diarrhea. So I concluded that she should not participate in a cremation and eat food
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that was provided at a cremation. I have confidence about it. The cause of diarrhea was not explained in medicalscientific terms. Instead, the caregiver used her intuition to link illness and the related situations as an explanation of illness. From this account, the caregiver’s reasoning concerning the cause of diarrhea included her own observation that eating foods at a cremation always aggravated the patient’s illness. She therefore linked her intuitive belief to the practical treatment for health maintenance and illness prevention by prohibiting the patient from participating in cremations any more. This example was typical of the way that the effectiveness of treatments was evaluated. Supernatural healing rites Before the Buddhist religion arrived in the country, Thai people believed in supernatural powers. It is believed that supernatural powers can have both positive and negative effects on human life. As a negative force, the supernatural agents can cause illness and interrupt the lives of people. On the other hand, a local god of a house and land, defined as a positive supernatural agent, can support and protect the lives of living descendants. Nowadays, supernatural beliefs remain strong in Thai society. Thais believe that each life consists of not only the body but also spiritual essences, khwan. In general, it is believed that khwan is bound to the body when a person is in ‘‘good health, has strength, and is leading a good life’’ (Tambiah, 1970, p. 227). However, it tends to leave the body in some situations such as sickness or an unstable state of mind. It is believed that the flight of khwan from the body may cause illness. In addition, separation of khwan from the body may worsen illness and prolong recovery (Kunstadter, 1976). Unlike the body, khwan is invisible. To call the flight of khwan back to the body or to keep khwan with the body, supernatural healing rites are required. Making a vow was one kind of supernatural healing rite commonly performed when the person deteriorated. As one family caregiver reported on her reason for making a vow: I was frightened. I thought she would not survive, so I did it. Whatever I could do, I did it. I just wanted her to recover. So I made a vowy I went to see astrologers. They said that ‘for that sick person at my home, our ancestors (referred to general ancestors in the south) and paternal grandfather spirit helped her.’ They said that our ancestor helped hery(smile)y They protect us. Without them, we could not survivey It is my belief. I believe in that way because I saw that she got bettery(silence)y
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The cause of the illness was not the main concern for this caregiver, rather the effect of illness on the life of the patient. In this sense, the word ‘survive’ meant to continue a life with the spirit essences, khwan, bound to the body. The mother was concerned that her daughter’s illness might cause the flight of khwan and these khwan might not come back to the body, which would cause death. This caregiver valued the ancestors as a safeguard of her family life. Therefore, making a vow to the paternal grandfather’s spirit was performed with the belief that these supernatural powers would save the life of the patient by stopping her ‘khwan’ from leaving her body. In this way, the hope for a cure was tied to maintaining wholeness between body and spirit. Supernatural forces not only cause positive effects but also negative effects in life. Another caregiver also elaborated on her own experience of encountering supernatural power: People in this generation may not believe that there is something that can haunt the body. But sometimes it looks like that and I have seen it with my eyes. When she first arrived here, her hand looked like a snake. She could not move one of her arms. It was heavy. She could not control herselfyit was like something pulled her. She tried to resist it. She sometimes screamed for help. She lay down on the floor and crawled. When I saw her, I was so scared. She looked like a snake. I strongly believe in this thing. I went to see the guardian spirit (means went to a Chinese monk at Chinese joss house). A [Chinese] monk said that she had bad fate. It was a thing that we could not see. It was an invisible thing. Bad luck had attacked her. A ghost haunted her body and she was under the powers of black magic. Black magic could make many things. It could be a disease or whatever it wanted her to be. The Chinese monk gave me a spirit necklace for her to wear. (Manee, caregiver) When modern medicine was unable to effect a cure, AIDS was explained in supernatural terms. The caregiver believed that it was a supernatural force that interrupted the life of the patient. She perceived that although the patient’s body was attacked, it was malevolent spirits that affected her life, which included her khwan. Her illness was caused by an attempt of the malevolent spirits to split the spiritual essences from her body. Since this attributed cause was invisible and outside the body of the patient, this caregiver decided to see a Chinese monk to communicate with the guardian spirits and negotiate for ‘the life of the patient’. As the illness continued Manee tried another spiritual strategy, a drink made of water mixed with rice paper covered in cabalistic script. She evaluated the effects of supernatural healing practices in different terms to physical therapies.
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Religious performances Religion and religious performances were also important in the search for a cure. The religious practice of merit making (usually going to the temple to pray and place offerings) enabled caregivers to interpret the meaning of present suffering and to engage in religious performances designed to support the continuation of the patient’s life. Caregivers considered that suffering caused by AIDS was the result of not enough merit making being performed by a patient in the previous life. To overcome the suffering of this life, merit making was performed. You know, nowadays, if someone asks me to make merit, I will do it, even if it is true or not. Although I may get little merit from doing this, I prefer to do it. I hope that this merit could help Bang to gain much merit, so he could live with me longery I pray everyday that if there is miraculous power, may be there will be a medicine to cure this virus one day and may be it will be not too late for him. Caregivers performed merit making with the belief that the merit they gained would balance any demerit acts in the past or transfer merit to the person with AIDS. They hoped that the result of merit making under the Buddha’s protection would to enable their loved ones to live longer until a cure was found. In this sense, the search for a cure was attached to the merit making process. It did not aim just to cure the body that had AIDS but also to free him from ‘suffering’ in this life or the next. It was evident in the interviews and participant observation that all the families hoped that their merit making activities might make the patient better. Religious healing rites were not only performed for the medical therapeutic purpose but also a moral and spiritual therapeutic purpose.
Combining therapies Although caregivers drew on a number of health care beliefs in the hope of finding a cure, the boundaries between these beliefs and the corresponding practices were remarkably fluid. Each of these caregivers moved between these competing belief systems drawing on more than one system in the search for a cure for the patient. Modern medicines and religious performances remained dominant as the main therapeutic treatments for the patient while other sources of therapeutic treatments were partially influenced by beliefs and partially by what was available for them at the time the illness occurred. As one caregiver explained: Manee: I went to a Chinese joss- house to pray for her. I told them (Chinese Gods) that my daughter
wasn’t well yet. I asked them to bless my daughter so that she would get well and go back to work soon. KN: You went to pray for her at a Chinese joss house but why do you have to go and see a doctor? Manee: I thoughty(short pause)y Sacred things would be another force to help her to recover, as well as that we, also, get support from the doctor. It will bey(short pause)y(Chinese) monks could cure one kind of thing while doctors could cure another thing. KN: Could you explain a bit more? Manee: Modern medicine is good. To take medicines is good, isn’t it? When we get sick, we have to see a doctor. It is impossible that we will not to go to see the doctor when we get sick. KN: Why? Manee: In case we are sick, if we go to see a monk only, he cannot help us, can he? If it is related to illness, a monk cannot help. We have to go and see a doctorybut if it related to things that may harm by magic, we have to see a monk or a guardian spirit or joss establishment. They could help us. But for her now, we don’t need to go to see a Chinese monk. KN: Why? Manee: For her this time, there is nothing spiritually wrong with her and it was not related to that (Black magic). All that happens to her now is related to her ‘disease’. KN: But previously, you went there. Manee: At that time, it was like she was harmed by magic. We could not see it. If we get bad luck, we will be harmed by it and have some symptoms such as a stomach pain. If we had taken her to see a doctor, she would not have recovered. She would certainly not recover. We had to take her to see a guardian spirity(silence & watching television)y KN: I see that she still wears that sacred necklace. Manee: I told her to wear it until she completely recovers. When she recovers, it will not be important whether she wears it or not. KN: You mean recover fromy Manee: Recover from being harm by black magic. KN: How will you know that she has recovered completely? Manee: When she does not look delirious. Initially, it looked like there was something haunting her body. After she received treatment from a Chinese sorceress monk, she got better. Then we took her to a hospital.
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At this time, her problems are not about black magic, but her ‘disease’. This lengthy exchange demonstrates the kind of conversations that occurred during the study in relation to the use of multiple health belief systems. This account also illustrates how modern medical logic and supernatural healing logic not only have distinct illness explanations and treatment approaches but also set out different criteria for evaluating the efficacy of treatment. From the caregiver’s perspective, the patient’s problem was a culturally specific disorder based on their indigenous belief that was not shared by modern medicine. As the same caregiver spoke of when asked about this issue: KN: Your daughter said that you put a piece of paper in water for Ja (patient) to drink when Ja was in a hospital. And the doctor blamed her. Could you tell me a bit more about this? Manee: Oh! yes that paper. It was like holy watery The doctor didn’t understand. (short pause) I was afraid that he would know. When he came, I would not provide this water to her (dried laugh)y When he went out, I poured it in a glass and gave to her after she took medicinesy(smile) but a [Chinese] monk told me that she had to see a doctor too because both ways could help her to get well sooner. This instance shows that caregivers were aware that health professionals held different views of sickness. Therefore, when caregivers were in a medical setting, they did not usually disclose their participation in spiritual healing to a doctor. They realized that their belief was possibly considered mistaken by medical professionals.
Conclusion Our research confirms an international observation related to health seeking behaviors among those with HIV/AIDS (Anderson, O’Conner, Macgregor, & Schwartz, 1993; Miles, Shaw, Paine, Hart, & Ceesay, 2001; Pawluch, Cain, & Gillett, 2000). The health seeking behaviors of this group of Southern Thai caregivers were dominated by a view that modern medicine held the best hope for a cure for their family member with AIDS. The findings reported here are from the early stages of the disease progression when the families were optimistic and hopeful. As they became aware that the available medicines and therapies were palliative in intent and not directed at a cure they began to look for other sources of cure. There was no discernable difference in the health seeking behaviors of those on anti-viral drugs. They also adopted
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a range of other alternative therapies and religious practices. Perceptions of the causes of AIDS and their assessment of the competency of various healers and treatments guided the choice of therapies selected by families. In this study, these families believed that life consists of an interconnection between mind, body, and spirit with each part inseparable from the other. Their holistic view of illness and suffering suggested that illness might be affected by various causes such as pathogens, supernatural affliction, or karma. The families made sense of their experiences using medical, therapeutic, and supernatural means. The rationale and judgment to use health care services was influenced by their lay knowledge about the harmful effects of disease and treatments on the lives of their loved ones. For some caregivers this meant searching for a secondary form of treatment to support the medical therapies. Others focused on addressing religious or supernatural causes that might hinder the efficacy of medical treatments. The search for a cure therefore was aimed to heal all the fragmented parts of life bringing unity and balance. The result of this study indicates that there is an urgent need for the establishment of a more holistic and palliative approach toward AIDS care.
Acknowledgements We are indebted to all families who were willing to share their stories with us. We are also very grateful to La Trobe University, which offered the first researcher scholarships, both La Trobe University Postgraduate Research Scholarship (LTU-PRS) and La Trobe University Overseas Postgraduate Research Scholarship (LTU-OPRS), to study in the Ph.D. program. We also thank the Thai Government for funding that enabled the second author to visit Thailand on a number of occasions and work with Thai nurses engaged in research.
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Search for a cure: narratives of Thai family caregivers living with a person with AIDS Kittikorn Nilmanata,*, Annette Streetb a
Department of Medical Nursing, Faculty of Nursing, Prince of Songkla University, Had Yai Songkhla 90112, Thailand b Cancer & Palliative Care Studies, La Trobe/Austin Health Clinical School of Nursing, PO Box 4445, Heidelberg, West Victoria 3081, Australia
Abstract Facing an incurable prognosis Thai families search for a cure for AIDS using all possible means available to them. This paper reports a longitudinal narrative case study of eight family caregivers caring for a relative with AIDS in rural Southern Thailand. The paper demonstrates how the caregivers living with a person with AIDS made sense of illness episodes, and how they chose and evaluated particular treatments and care. Caregivers moved between modern medicine, traditional/folk medicine, supernatural healing rites, religious performances, and home remedies in their search for a cure. The findings indicate that a more holistic and palliative approach is needed toward AIDS care. r 2003 Elsevier Ltd. All rights reserved. Keywords: Thailand; AIDS; Family; Traditional/folk medicine; Supernatural healing rites; Thai religious performances
Introduction Thailand’s HIV/AIDS epidemic began in 1984 and dramatically increased throughout the following years. By October 2001, the cumulative number of AIDS cases was estimated at 181,484, with an estimated 131,461 people currently living with AIDS in Thailand (Division of Epidemiology Ministry of Public Health, 2001). Although some anti-retroviral drugs are now available, the efficacy of such treatments is still inconclusive. Moreover, people with AIDS who are poor and live in developing countries, including Thailand, have little access to these anti-retroviral drugs. Due to limitations on the number of available inpatient beds, the Thai government launched a home and community care program for people with AIDS where the family was expected to play a key role in taking care of AIDS sufferers. However, we have little knowledge about how these families understand AIDS and the health approaches they pursue in the hope of a cure. *Corresponding author. Tel: +66-74-286521; fax: +66-74212901. E-mail address: [email protected] (K. Nilmanat).
This paper reports findings from a narrative case study examining the experiences of family members caring for a relative with AIDS in rural Southern Thailand. The search for a cure was the dominant theme in the narratives of these family caregivers. In this paper, we explore the effects of this search on the meaning making process. We also examine the construction of health seeking behaviors, the way that the caregivers made sense of illness episodes, and how they chose and evaluated particular treatments and care.
Illness narratives Illness in general, and chronic illness in particular, has been interpreted as a disruption of an ongoing life (Bury, 1982; Hyden, 1997; Radley, 1999; Williams, 2000). Charmaz (1983, 1987, 1999) points out that chronic illness leads the ill person and their family to the recognition that their old patterns of living are no longer useful and they need to reconfigure their lives to take account of the losses and changes chronic illness brings. A key strategy to reconstruct their lives is through repetition of their stories about the illness experience
0277-9536/$ - see front matter r 2003 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2003.12.003
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(Bury, 2001; Charmaz, 1999; Good, 1994; Hyden, 1997; Williams, 1984). Storytelling or narrative has been described as a powerful form of expressing suffering and experiences related to suffering in a particular social and historical context (Bury, 1991, 2001; Charmaz, 1999; Frank, 1992; Hyden, 1997; Williams, 1984). Hyden (1997) highlights that illness narratives offer patients an opportunity to reframe their experiences to construct a new context and to fit the illness disruption into a temporary framework. Narrative researchers point out that modern medicine splits the diseased body from the lives of the ill person and silences their everyday experiences (Bury, 2001; Charmaz, 1999; Frank, 1995; Hyden, 1997; Kleinman, 1988; Radley, 1999). Therefore in recent illness narrative studies, narrative researchers have attempted to advocate for the ill to reclaim their voice and to influence health care professionals to listen to their clients’ stories being told through the diseased body.
Method A longitudinal narrative case study was conducted over a period of 8 months in Songkhla Province in Southern Thailand. Eight caregivers were recruited to the study through an AIDS clinic at a large hospital and through admissions to two medical wards in a tertiary level teaching hospital. People with AIDS were asked if their primary caregiver was aware of their AIDS status and if they would give permission for the researcher to approach the caregiver to participate in the study. Informed consent was obtained from the patients and caregivers. Pseudonyms were used to protect both patients’ and key caregivers’ confidentiality. The Faculty of Health Sciences Human Research Ethics Committee of La Trobe University approved the study. Regular visits were conducted to each family for approximately 6 months with the fieldwork conducted from October 1999 to May 2000. However, field visits also included the HIV clinic at the outpatient department of a tertiary hospital, an inpatient medical unit, and a Buddhist temple providing alternative care for people with AIDS. In this study, although a primary caregiver was selected as the key informant, other family members were also sources of data. Family members joined in the conversations to share their own stories. The data from other family members revealed their concerns and how these concerns shaped the experience for caregivers and their significant others. Therefore, data from other family members offered us an opportunity to knit their stories together. The data collection methods included interviews, participant observation, and extensive field journal notes. Four forms of interviews were used: structured demographic data, semi-structured interviews, focused
conversations, and mutual dialogue. Demographic data of the patients and caregivers, as well as their illness history were collected in a structured interview format. Semi-structured interviews were mainly conducted during the initial stage of the relationship in each case. When the relationship developed, the patients and caregivers became active and started telling their own stories. As a consequence of this, the form of interviews changed to ‘focused conversation’. Through focused conversations, the caregivers were asked to describe their experiences or suffering. In addition, probes and questions were asked to pursue their narratives further. When the relationship with the caregivers achieved a mutual level of trust, the interviews changed to more informal conversation. We classified this kind of interview as ‘mutual dialogues’. Caregivers talked about their concerns, other people and the everyday situations surrounding them. Stories were shared. In this sense, personal stories were used as a tool to lead the dialogic and reciprocal exchange (Aranda & Street, 2001). Data from such ‘mutual dialogues’ provided us with opportunities to better understand how caregivers made sense of their situation and provided the background to the cases. The interview process was dynamic and shifted back and forth among these three forms. Interviews along with other methods of data gathering allowed us to construct holistic cases. Participant observation was another key method to gather comprehensive and exhaustive information about each case (Corbetta, 2003). In this study, the main focus of observation was on the ways caregivers dealt with and participated in their social world, such as what they talked about concerning their belief about health, life, and death along with what they did to support this belief. We witnessed how the caregivers managed and cared for patients and also observed what kinds of medicines and remedies caregivers provided for the loved one. As the first author was a Thai nurse who spent a relatively long time with these families, she did develop close relationships with them. She joined in their conversations and in some family’s activities and also observed the many personal issues surrounding their lives. These observations enabled her to get a feel for the natural flow of events (Taylor, 1991). Almost every day in the field, the first author spent at least 1 hour writing a field journal. The field journal consisted of detailed descriptions of conversations and situations along with the struggles, feelings, thoughts, and reflections of the observer. Reflection upon the field journal enabled us to begin to comprehend the complexity of the inter-subjective meaning hidden within the context (Street, 1995). Data analysis was started simultaneously with entry into the field. After completing fieldwork, the transcriptions and field-notes of each case were read several times in order to develop and generate codes leading to
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emergent categories. A comparative table of these eight cases was constructed in order to see the similarities and diversities of each case. These analytical approaches to each case helped to identify an overall pattern of complexity and the appropriate causal links to be analyzed (Yin, 1994). Narrative analysis was used to analyze these illness stories. Frank (1995) suggests that to analyze stories, researchers have to think with the stories, not about the stories. He describes the terms ‘‘to think with stories’’ as ‘‘to experience it affecting one’s own life and to find in that effect a certain truth of one’s life’’ (Frank, 1995, p. 23). The final stage of the analysis occurred when we combined the cases and structured them into theorized narratives.
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behaviors. This was particularly evident in the early stages of the illness, reported in this paper, when caregivers were optimistic despite medical prognoses. They exerted themselves to help their loved one return their health to normal. The search for a cure was central for caregivers of patients on or off anti-viral drugs. This hope prompted caregivers to try various kinds of therapeutic treatments that were informed by competing systems of thought and views about health. These caregivers searched for a cure using all possible means: therapeutic treatments in Western/modern medicines, traditional medicines, religious performances and supernatural healing rites. We will now consider how these varied systems of thought constructed the way family caregivers thought and acted in sets of illness beliefs.
Translation issues Faith in Western/modern medicine In the preparation stage the protocol and ethics documentation were written in English and translated into Thai. This translation was then independently backtranslated to ensure accuracy and fidelity to the original intent. During the analysis process, the interviewed transcripts were listened to as the original source of data. This process allowed us to keep the feeling of the data. After developing and generating core themes and emergent codes, the first author translated the caregiver’s accounts into English. The rationale for doing the translations herself related to an ethical concern about the confidentiality of the data and the need to retain the contentualized meanings. Profile of the patients and caregivers Eight families with AIDS agreed to participate in this study. Four men and four women with AIDS agreed that their carers could participate in the study. All were heterosexual and only three patients had access to any anti-retroviral therapy. Significantly, all caregivers were women who had been assigned to take responsibility for the care of the patients. The caregivers ranged in age from 27 to 61 years of age. One caregiver had a Bachelor of Nursing, two women had completed grade 12 and five caregivers had finished their study at grade 4 or lower. Two of the caregivers were wives who were currently unemployed and had tested HIV positive from contact with their husbands. The remaining six caregivers were mothers of the patients. Of the six mothers, four of them continued working in cottage industries whilst they provided care.
Findings Evidence from this study indicated that a search for a cure strongly influenced the caregivers’ health seeking
Western or modern medicine was the dominant approach adopted by all caregivers. Thailand has wholeheartedly endorsed and adopted Western medicine as the basis for its health care. When there were no externally visible symptoms of AIDS evident on the body of their loved ones, caregivers assumed that it meant no disease was present. Caregivers described how when their loved one was feeling unwell they looked to a doctor who could use technology to identify the invisible signs of AIDS inside the body. The efficacy of modern medicine and technologies, together with respect for the knowledge of health professionals, confirmed their belief that the hospital was the best place to ‘cure’ disease. Caregivers were reliant on the doctor to confirm or disconfirm their own observations. With the exceptions of two cases all patients had a regular appointment with a doctor at least once a month. In addition, the valuing of medical knowledge structured the way caregivers made decisions concerning the place where ‘cure’ and ‘care’ should be provided. As one caregiver elaborated on this issue when asked about taking care of a patient at home: If we want him to get better, he has to stay in a hospital. It is better to be close to doctorsy Because when he has symptoms, we will tell a doctor. The doctor will prescribe medicines for us. If he is at home, we will not know what kind of medicines that we should provide for himy because patients don’t have this kind of knowledge. So they have to depend on doctors. They (doctors) asked us to care for the patient at home, but relatives are not doctors. When the patient has symptom, what kind of food or medicine will we provide for him or her? We are not doctors, so we cannot care for him at home, can we?y (At a hospital) the doctor will visit us every morning and ask us about symptoms. If he has a sore mouth, the doctor will prescribe medicines for us.
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If he has fever, the doctor will provide anti-pyretic drug for him. For anti-pyretic drug, it is not a problem (for us too) (but) we sometimes don’t know (that he had a fever) because we don’t have a thermometer. Although we touched his head, we might not know that he had a fever. If he is in a hospital, it will be convenient. Doctors and nurses manage medication for us. At the time of the study the caregivers were not able to access physician care at home so they were forced to resort to hospitals for care, even when medical advice suggested that there was little that could be done in hospital. The narratives demonstrated that caregivers expected that the biomedical knowledge and technologies could cure their loved one. When symptoms were present they would take the person to hospital to be close to doctors and nurses. When symptoms appeared to abate, caregivers felt comfortable when doctors prescribed medicines for the patients to take home. They indicated that medicines were the doctor’s agent. At home, caregivers could encourage the patient to comply with the medication regime in their anticipation of a cure. Traditional/folk medicine Although all caregivers initially reported faith in modern medicine to cure their loved one, as the disease progressed they looked to traditional or folk medicine as an additional source of curative hope to biomedicine. Unlike modern medicines, people found out about the efficacy of traditional/folk treatments through word of mouth. However, as AIDS is a stigmatized disease, caregivers in this study indicated that they had to be vigilant and not to be obviously interested in any neighborhood discussion on the efficacy of AIDS treatments. At the time of this study, no traditional or folk healers or institutions had obtained government approval for AIDS treatments by the Ministry of Public Health. Six of the eight cases sought folk treatments at various stages. These caregivers used this traditional sector intermittently. Some caregivers were still vigorously trying out traditional remedies in a desire for a cure, whilst others felt uncertain about turning from medical treatments to traditional medicines. A common form of folk medicine that caregivers sought was ‘ya mor’ or ‘ya-tom’. ‘Ya-mor’ was basically made from roots of trees and mixed with herbs. To prepare this ‘ya’ or medicine, a client has to put a mixture of tree roots and leaves or herbs in a pot (or ‘mor’) and boil (or ‘tom’) it. Folk healers commonly were monks or laypersons who lived in the local community. One caregiver reported efficient effects from folk treatments and intended to continue it.
We provided ‘ya tom’ for her tooy We boiled ‘ya mor’ for her. This ‘ya’ is well known. This ‘ya tom’ is specific for this diseasey It is specific for AIDS. Her friends have recovered because of taking it. So they told us. They took about 4 pots. They suggested that she take it. A man who lives over there recovered. Previously, his hair was falling out. Now, he is healthy. I don’t know how it cures, but he has recovered. I thought it was worth trying because someone else became better from taking it. (Tan, caregiver) San’s (the patient’s) family was hopeful that the ya mor could provide a cure despite the medical prognosis. Notably, the caregiver accepted the medical diagnosis of AIDS and was not concerned with an explanation of AIDS in folk terms or the process of healing. Tan was only interested in the curative powers (‘‘I don’t know how it could cure, but he recovered’’). The caregiver evaluated the worth of traditional treatments by visible symptomatic improvement and subjective feeling. In other words, if the patient appeared to be less obviously symptomatic then the caregiver trusted this subjective evidence over objective and scientific methods. Food prohibitions were also invoked to prevent the illness from inhibiting the efficacy of modern medicine and the healing process. In general, caregivers learnt such home remedies by word of mouth from one generation to another. They also learnt remedies from their real experiences when they encountered illness and generalized this new folk knowledge to care for the patient. Nong’s (patient) main symptom was diarrhea. Klub (caregiver) noticed that Nong had diarrhea and became bedridden on each occasion after she had eaten foods at a cremation. Finally, Klub concluded that Nong’s disease was aggravated by cremation food. Klub spoke of her experiential learning: Klub: We went to a cremation. After we came back, she got sick immediately. So I thought that the cremation was injurious with this disease. I experienced it 3 timesy(silence)y KN: I still don’t understand. You mean that Nong went to a cremationy Klub: then, yhow can I say? They provided a bowl of hot curry that was just taken from a stove. I told her not to take it because I had learned from a previous cremation that we participated in. (After taking it,) she got worse immediately. It (a cremation) is injurious for this disease’. I had learned from experiencing on these occasions. After the second cremation that she participated in she got worse. She had vomiting and diarrhea. So I concluded that she should not participate in a cremation and eat food
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that was provided at a cremation. I have confidence about it. The cause of diarrhea was not explained in medicalscientific terms. Instead, the caregiver used her intuition to link illness and the related situations as an explanation of illness. From this account, the caregiver’s reasoning concerning the cause of diarrhea included her own observation that eating foods at a cremation always aggravated the patient’s illness. She therefore linked her intuitive belief to the practical treatment for health maintenance and illness prevention by prohibiting the patient from participating in cremations any more. This example was typical of the way that the effectiveness of treatments was evaluated. Supernatural healing rites Before the Buddhist religion arrived in the country, Thai people believed in supernatural powers. It is believed that supernatural powers can have both positive and negative effects on human life. As a negative force, the supernatural agents can cause illness and interrupt the lives of people. On the other hand, a local god of a house and land, defined as a positive supernatural agent, can support and protect the lives of living descendants. Nowadays, supernatural beliefs remain strong in Thai society. Thais believe that each life consists of not only the body but also spiritual essences, khwan. In general, it is believed that khwan is bound to the body when a person is in ‘‘good health, has strength, and is leading a good life’’ (Tambiah, 1970, p. 227). However, it tends to leave the body in some situations such as sickness or an unstable state of mind. It is believed that the flight of khwan from the body may cause illness. In addition, separation of khwan from the body may worsen illness and prolong recovery (Kunstadter, 1976). Unlike the body, khwan is invisible. To call the flight of khwan back to the body or to keep khwan with the body, supernatural healing rites are required. Making a vow was one kind of supernatural healing rite commonly performed when the person deteriorated. As one family caregiver reported on her reason for making a vow: I was frightened. I thought she would not survive, so I did it. Whatever I could do, I did it. I just wanted her to recover. So I made a vowy I went to see astrologers. They said that ‘for that sick person at my home, our ancestors (referred to general ancestors in the south) and paternal grandfather spirit helped her.’ They said that our ancestor helped hery(smile)y They protect us. Without them, we could not survivey It is my belief. I believe in that way because I saw that she got bettery(silence)y
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The cause of the illness was not the main concern for this caregiver, rather the effect of illness on the life of the patient. In this sense, the word ‘survive’ meant to continue a life with the spirit essences, khwan, bound to the body. The mother was concerned that her daughter’s illness might cause the flight of khwan and these khwan might not come back to the body, which would cause death. This caregiver valued the ancestors as a safeguard of her family life. Therefore, making a vow to the paternal grandfather’s spirit was performed with the belief that these supernatural powers would save the life of the patient by stopping her ‘khwan’ from leaving her body. In this way, the hope for a cure was tied to maintaining wholeness between body and spirit. Supernatural forces not only cause positive effects but also negative effects in life. Another caregiver also elaborated on her own experience of encountering supernatural power: People in this generation may not believe that there is something that can haunt the body. But sometimes it looks like that and I have seen it with my eyes. When she first arrived here, her hand looked like a snake. She could not move one of her arms. It was heavy. She could not control herselfyit was like something pulled her. She tried to resist it. She sometimes screamed for help. She lay down on the floor and crawled. When I saw her, I was so scared. She looked like a snake. I strongly believe in this thing. I went to see the guardian spirit (means went to a Chinese monk at Chinese joss house). A [Chinese] monk said that she had bad fate. It was a thing that we could not see. It was an invisible thing. Bad luck had attacked her. A ghost haunted her body and she was under the powers of black magic. Black magic could make many things. It could be a disease or whatever it wanted her to be. The Chinese monk gave me a spirit necklace for her to wear. (Manee, caregiver) When modern medicine was unable to effect a cure, AIDS was explained in supernatural terms. The caregiver believed that it was a supernatural force that interrupted the life of the patient. She perceived that although the patient’s body was attacked, it was malevolent spirits that affected her life, which included her khwan. Her illness was caused by an attempt of the malevolent spirits to split the spiritual essences from her body. Since this attributed cause was invisible and outside the body of the patient, this caregiver decided to see a Chinese monk to communicate with the guardian spirits and negotiate for ‘the life of the patient’. As the illness continued Manee tried another spiritual strategy, a drink made of water mixed with rice paper covered in cabalistic script. She evaluated the effects of supernatural healing practices in different terms to physical therapies.
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Religious performances Religion and religious performances were also important in the search for a cure. The religious practice of merit making (usually going to the temple to pray and place offerings) enabled caregivers to interpret the meaning of present suffering and to engage in religious performances designed to support the continuation of the patient’s life. Caregivers considered that suffering caused by AIDS was the result of not enough merit making being performed by a patient in the previous life. To overcome the suffering of this life, merit making was performed. You know, nowadays, if someone asks me to make merit, I will do it, even if it is true or not. Although I may get little merit from doing this, I prefer to do it. I hope that this merit could help Bang to gain much merit, so he could live with me longery I pray everyday that if there is miraculous power, may be there will be a medicine to cure this virus one day and may be it will be not too late for him. Caregivers performed merit making with the belief that the merit they gained would balance any demerit acts in the past or transfer merit to the person with AIDS. They hoped that the result of merit making under the Buddha’s protection would to enable their loved ones to live longer until a cure was found. In this sense, the search for a cure was attached to the merit making process. It did not aim just to cure the body that had AIDS but also to free him from ‘suffering’ in this life or the next. It was evident in the interviews and participant observation that all the families hoped that their merit making activities might make the patient better. Religious healing rites were not only performed for the medical therapeutic purpose but also a moral and spiritual therapeutic purpose.
Combining therapies Although caregivers drew on a number of health care beliefs in the hope of finding a cure, the boundaries between these beliefs and the corresponding practices were remarkably fluid. Each of these caregivers moved between these competing belief systems drawing on more than one system in the search for a cure for the patient. Modern medicines and religious performances remained dominant as the main therapeutic treatments for the patient while other sources of therapeutic treatments were partially influenced by beliefs and partially by what was available for them at the time the illness occurred. As one caregiver explained: Manee: I went to a Chinese joss- house to pray for her. I told them (Chinese Gods) that my daughter
wasn’t well yet. I asked them to bless my daughter so that she would get well and go back to work soon. KN: You went to pray for her at a Chinese joss house but why do you have to go and see a doctor? Manee: I thoughty(short pause)y Sacred things would be another force to help her to recover, as well as that we, also, get support from the doctor. It will bey(short pause)y(Chinese) monks could cure one kind of thing while doctors could cure another thing. KN: Could you explain a bit more? Manee: Modern medicine is good. To take medicines is good, isn’t it? When we get sick, we have to see a doctor. It is impossible that we will not to go to see the doctor when we get sick. KN: Why? Manee: In case we are sick, if we go to see a monk only, he cannot help us, can he? If it is related to illness, a monk cannot help. We have to go and see a doctorybut if it related to things that may harm by magic, we have to see a monk or a guardian spirit or joss establishment. They could help us. But for her now, we don’t need to go to see a Chinese monk. KN: Why? Manee: For her this time, there is nothing spiritually wrong with her and it was not related to that (Black magic). All that happens to her now is related to her ‘disease’. KN: But previously, you went there. Manee: At that time, it was like she was harmed by magic. We could not see it. If we get bad luck, we will be harmed by it and have some symptoms such as a stomach pain. If we had taken her to see a doctor, she would not have recovered. She would certainly not recover. We had to take her to see a guardian spirity(silence & watching television)y KN: I see that she still wears that sacred necklace. Manee: I told her to wear it until she completely recovers. When she recovers, it will not be important whether she wears it or not. KN: You mean recover fromy Manee: Recover from being harm by black magic. KN: How will you know that she has recovered completely? Manee: When she does not look delirious. Initially, it looked like there was something haunting her body. After she received treatment from a Chinese sorceress monk, she got better. Then we took her to a hospital.
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At this time, her problems are not about black magic, but her ‘disease’. This lengthy exchange demonstrates the kind of conversations that occurred during the study in relation to the use of multiple health belief systems. This account also illustrates how modern medical logic and supernatural healing logic not only have distinct illness explanations and treatment approaches but also set out different criteria for evaluating the efficacy of treatment. From the caregiver’s perspective, the patient’s problem was a culturally specific disorder based on their indigenous belief that was not shared by modern medicine. As the same caregiver spoke of when asked about this issue: KN: Your daughter said that you put a piece of paper in water for Ja (patient) to drink when Ja was in a hospital. And the doctor blamed her. Could you tell me a bit more about this? Manee: Oh! yes that paper. It was like holy watery The doctor didn’t understand. (short pause) I was afraid that he would know. When he came, I would not provide this water to her (dried laugh)y When he went out, I poured it in a glass and gave to her after she took medicinesy(smile) but a [Chinese] monk told me that she had to see a doctor too because both ways could help her to get well sooner. This instance shows that caregivers were aware that health professionals held different views of sickness. Therefore, when caregivers were in a medical setting, they did not usually disclose their participation in spiritual healing to a doctor. They realized that their belief was possibly considered mistaken by medical professionals.
Conclusion Our research confirms an international observation related to health seeking behaviors among those with HIV/AIDS (Anderson, O’Conner, Macgregor, & Schwartz, 1993; Miles, Shaw, Paine, Hart, & Ceesay, 2001; Pawluch, Cain, & Gillett, 2000). The health seeking behaviors of this group of Southern Thai caregivers were dominated by a view that modern medicine held the best hope for a cure for their family member with AIDS. The findings reported here are from the early stages of the disease progression when the families were optimistic and hopeful. As they became aware that the available medicines and therapies were palliative in intent and not directed at a cure they began to look for other sources of cure. There was no discernable difference in the health seeking behaviors of those on anti-viral drugs. They also adopted
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a range of other alternative therapies and religious practices. Perceptions of the causes of AIDS and their assessment of the competency of various healers and treatments guided the choice of therapies selected by families. In this study, these families believed that life consists of an interconnection between mind, body, and spirit with each part inseparable from the other. Their holistic view of illness and suffering suggested that illness might be affected by various causes such as pathogens, supernatural affliction, or karma. The families made sense of their experiences using medical, therapeutic, and supernatural means. The rationale and judgment to use health care services was influenced by their lay knowledge about the harmful effects of disease and treatments on the lives of their loved ones. For some caregivers this meant searching for a secondary form of treatment to support the medical therapies. Others focused on addressing religious or supernatural causes that might hinder the efficacy of medical treatments. The search for a cure therefore was aimed to heal all the fragmented parts of life bringing unity and balance. The result of this study indicates that there is an urgent need for the establishment of a more holistic and palliative approach toward AIDS care.
Acknowledgements We are indebted to all families who were willing to share their stories with us. We are also very grateful to La Trobe University, which offered the first researcher scholarships, both La Trobe University Postgraduate Research Scholarship (LTU-PRS) and La Trobe University Overseas Postgraduate Research Scholarship (LTU-OPRS), to study in the Ph.D. program. We also thank the Thai Government for funding that enabled the second author to visit Thailand on a number of occasions and work with Thai nurses engaged in research.
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