Struggling for Health: The Experiences of Poor Families in Treatment Decision Making in Jogjakarta, Indonesia*

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Easter Hillary Gibbs
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1 Struggling for Health: The Experiences of Poor Families in Treatment Decision Making in Jogjakarta, Indonesia* Retna Siwi Padmawati Center for Bioethics and Social Medicine Faculty of Medicine, Gadjah Mada University Jogjakarta, Indonesia ABSTRACT As public sector healthcare services benefited more for better-off patients, private sectors had relatively large share for healthcare practiced. However it was not always followed by the good quality of healthcare. Poor families had to struggle in the existing healthcare system to survive. This paper aimed at exploring the experiences of how health resources were utilized by people in the poor neighborhood in Jogjakarta, Indonesia. Family members of 28 households were involved and regularly interviewed in 12 months period to follow perceptions, treatment sought, the development of illness episodes, and decision making processes. Poor families undertook relevant steps to counter their sufferings according to the perceived health problems, available health resources, and who were the actors on the decision making process. Many resources had been mobilized to cure their illness episodes. The socio-economic consequences of the current and previous illness episodes were also taken into account. * This project is funded by DANIDA, Project No. Journal nr Dan 8-f (Overall PI: Jens Seeberg, PhD University of Aarhus, Denmark) INTRODUCTION The improvement of health condition in Indonesia in the recent decades has been attributed to the expanse of public health facilities by the government in the 1970s and 1980s. As an example, the infant mortality rate has been decreased from 118 per 1000 live birth in 1970 into 35 in 2003; and the live expectancy has been increased from 48 years into 66 years in the same period. Despite the improvement, new challenges have emerged with regard to the complexity of the problems and the unequal distribution of social economic and regional in the health system. Indonesia is now in the middle of epidemiological transition as the incommunicable disease is drastically increased, while infectious diseases remain the main cause of morbidity. In some provinces, infant and child mortality rates are higher compared to other Asian poor countries, while the poor have obtained very poor access of health care. Furthermore, there is a decrease of health condition and the utilization of public health facilities and there is also a tendency to use private health sector as the main health care resources, even for the poor. Compared to 1990s, only half of the population received

2 immunizations, only one third of the TB patients have been cured, and in general, the use of public health facilities have been decreasing as many more Indonesian choose private health facilities for their health problems In most part of the country, private sector has dominated the provision of health facilities. More than two third of available ambulatory facilities have been provided by private sectors, more than 50% of the hospitals are private hospitals, and 30-50% health care services have been provided by the private sectors. The poor tend to use more nonmedical health providers so that the utilization of hospital is very low among them. As mentioned by Harding and Preker (2003), not only the poor using private providers, they most often utilize informal, unqualified, and poorly skilled practitioners or pharmacists. In Jogjakarta, in the urban poor neighborhood of. Square km or in the area of households, there are more than 70 private providers practicing in the area, ranging from small kiosk, unlicensed drug store, pharmacists, massagers, private doctors, nurses, midwives (traditional and trained), herbalist and other forms of traditional medicines, to clinic and small hospital. Since 1980s, the Indonesian government has been implementing essential health package for the people by building a primary health center for each sub district all over the country. These health centers provide minimal and primary curative cares with a very low cost, and mostly did outreach activities for health promotions. However, in the urban areas, despite the low cost, it has been seen ineffective and underutilized. The Indonesian government is now considering a health reform on the health cost for the poor. Some schemes have been applied in some areas. Among others are health insurance for the poor, free access for health center facilities, direct cash from the government pengurangan subsidy in gasoline, and local private health insurance at a very low monthly cost. Despite the benefit for the poor, some problems occurred in the study area questioning who the poor are, why some families are receiving the insurance and not others, and to what extent the poor could use the insurance for their health problems. OBJECTIVES The general objective of the study was to explore the experiences of how health resources were utilized by people in the poor neighborhood in Jogjakarta, Indonesia. More specifically, this study was trying to identify family perceptions toward illness and available health resources, family and individual health seeking behavior, the decision making processes to take certain treatment, and resources that have been mobilized to treat previous and current health problems. METHODS The setting

3 The study was conducted in the poor area of Jogjakarta in the subdistrict of Tegalrejo and Jetis from the end of 2004 to the early The poor families were resided in the illegal lot along the riverbank and the railway. Their houses were from bamboo, semi concrete, or concrete which sometimes were rented from somebody who resided in the area for years. Access to clean water, toilet, and other public facilities were very limited. Although public wells and water pumps were available, some families took water from the river for their cooking, bathing, and laundering. Subjects Subjects or patients or families were contacted on exit from the different private practitioners clinics or facilities and asked to participate. Besides, a free listing on the diseases mostly occurred in the urban poor neighborhood was also done to identify the most to the least health problems suffered by the members of the families in the community. Twenty eight families participated in the study involving more than 35 patients. Participating patients and families were followed over a 12 months period and interviewed with regular intervals to follow perceptions, treatment choices made, development of illness episode, and decision-making processes. Information was obtained from the household heads, the wives, and other adult member of the families. Data collecting Data were generated during home visits through the use of unstructured and semistructured interviewing, in combination with observations and note-taking. Audiorecording devices were used to enhance data quality.

4 RESULTS AND DISCUSSIONS Characteristics of the families Most the household heads and their wives who involved in the study aged more than 35 years old. Only six families are young couple on the late 20s and early 30s, while 13 families are senior couples aged more than 50 year old. Of all the families, one was single and two were widows. Most of them stayed with their extended families, either with married sons and or daughters, grandchildren, or brothers and sisters in very small houses or in daily or monthly renting rooms. The occupations of the families were lower class informal sectors ranged from singing beggars, paddy cap drivers, labors, street vendors, laundry helps, helpers, parking attendants, scavenger/garbage collectors, and massagers. Some families also relied on the activities of their years old children who become singing beggars in the street after school hours. Their income were ranged from Rp 300,000 Rp 700,000 or (USD 35 80) per month Only two household heads that had senior high school education. Others had either elementary or junior high school. Most of the wives only had some elementary school and some junior high school. The families have been mostly long residences of Tegalrejo and Jetis or about years of residency. Only two families resided in the area for less than 10 years. Types of and perceptions towards Illness The families experiences symptoms such as cough, influenza, headache, fatigue, diarrhea, stomach upset, pain on the bones, masuk angin (lit. wind enter to the body), etc. These symptoms were commonly and frequently experienced by most members of the families. All the households had at least one member who suffered from chronic diseases such as diabetes, hypertension, stroke, TB, arthritis, lung disease and difficulty in breathing, tumor, kulit mengelupas, psychotic, asam urat, asthma, and others People classified illnesses into mild - severe, common - uncommon, curable - incurable, and physic - non physic. Symptoms of cough and flu, for instance, were mild, common, curable, and physical symptoms. While masuk angin can be mild, common, curable, physical but also non physical because it was involving the longer time to cure. Longer symptom of masuk angin was perceived as a sign of more severe illnesses. As people pre-classified illnesses, there were so many health problems were selfdiagnosed and self-treated. I took the same medicines for my hypertension as my neighbor had, because I had the same symptoms with her. When I saw her recover very

5 fast from stiff neck and headache, I asked her what medicines she took. I bought the medicines in the drug store in Bah Gemuk. It helps a little. (Mr. Sukardi, 67 years, persistent stiff neck) I have taken 6 bottles of Samurat for my asam urat but unlike my sister, it did not help me. I still feel the pain on my foot (Mrs. Sutilah, 65 years, fatigue) Perceptions towards health resources and health seeking behavior In Jetis and Tegalrejo, there were so many health resources available in the neighborhood. Among others were kiosk, drug store, pharmacy, nurses, general practitioner, specialist doctor, health center, clinic, massager, traditional birth attendant (TBA), traditional healers, doctor acupuncture, and traditional herbal Chinese and Javanese healers. People saw health resources available as complementary to each other. A concept of cocok or fit was extensively known. Some symptoms might be cocok or cured using medicines from the kiosk but not relief when the patients took medicines from a nurse. Mild and common illnesses can be solved using medicines or herbal medicines sold in the kiosk. Kiosk and bigger drug store was seen as primary resources for common health problems. When serious problem occurred, then the patient might consult either to a doctor, specialist, or traditional healer until he/she found the one that is fit or cocok. If the medicine is cocok or fit, then the disease or symptom will be cured Public health center was also consulted, although after first or second encounter usually the families refused to return back for the same or other problems. They preferred to go to the health center provider after office hours or during their private practice to consult the provider. I don t want to go back to the Puskesmas [health center] because the medicines are the same medicines for all health problems. When I got cough or fatigue, the same medicines were given to me.. that is why it took longer time to get recovered. Better to go to Pak Sigit s house [name of the male nurse] because he will give me more effective medicines in the evening practice [during his private practice] though I have to pay more.. On more serious and chronic diseases and on the searching for the medicines that was fit to the disease, patient also sought the help from oracle from the neighborhood or even to other towns. On the effort of searching the cocok medicines, there was a tendency for the families to go back to their hometown.

6 Case of diabetic patient who went to a healer who transferred her disease to animals Women with dermatologic case Women with intoxication Resource mobilization There were some resources for the poor to get access for better health. If they had no cash, they would ask for debt from neighbors or relatives. For more serious illness they will sell their assets such as television, radio, fan, or even some clothes. In some cases, local leader and somebody from the hometown will also lend some money for the patients and families to go to the hospital or some spiritual healers There were also some resources from local bank that can be borrowed for daily payment. They may borrow at the most of Rp 300,000 (USD 35) for three months for Rp 5,000 (0,60 cents) daily payment. In the last 6 months the government also released money from the subsidy of gasoline. The government increasing the price of gasoline but some portion of it should be returned to the poor. One poor family would receive cash of Rp 100,000 (USD 12) per month. The cash was released every three months. However, problems occurred as to determine who the poor are, because so many families in the neighborhood will list themselves as poor to get the cash. In the hope that they will get the cash in the next three months, some families already sold their portion to get some advance cash for their health problems. Health insurance for the poor was also introduced by the government. The government would pay for the poor, but it was only limited to 10% of the population in each sub district. Problems were also occurred in determining who the poor were, so that so many poor families could not get access for better health. Among the family in this study, only six who could benefit from the insurance. Others usually took from their own pocket if they had health problem and had to consult providers Other local insurance also known by the people in the neighborhood. Every month someone from the insurance company would collect money as much as Rp 1000 (13 cent USD) per person. They would get a card to be presented in the hospital if they had any health problem. It was worked for the first three months. People refused to continue to pay because the collector from the insurance took the money for himself. They could not use their insurance card anymore for insurance. Treatment decision making

7 For mild and curable illness, usually the patients themselves or the core family would take decision on to where they should consult the provider In the extended families, the grandparents especially grandmother would take the decision on the providers to be consulted, in the core family, usually mother who will take decision on the treatment For more serious problem and longer period of disease, the local leader will take decision for the patients and family. It was also involving the responsibility of the money to pay for consultation. For more serious problem, someone from the original hometown will also come and decide for the patients and families on where to go. On very special cases, they would support the patients and families. In the neighborhood, it was found two families one with diabetes and one with cataract who received advices and money from the original villages. CONCLUSIONS Poor families undertook relevant steps to counter their sufferings according to the perceived health problems, available health resources, and who were the actors on the decision making process. To some extent, they could also mobilize some resources to gain health. However, appropriate and culturally accepted system should be designed for the better health of the poor. Poor people had had enough struggled to gain better health, something that should not be wasted by a poor health system.

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