SOCIAL AND ECONOMIC IMPACTS ON REPRODUCTIVE HEALTH WOMEN WITH PARAPLEGIA A CASE STUDY OF INDONESIAN WOMEN WITH PARAPLEGIC

Introduction

Health is human right however poor people may not live healthy. Socio-economic deprivation has been highly correlated with poor health, and is primarily responsible for inequalities in health amongst the social strata (Chermack:90). Concern to health problems and poverty, international communities at the Millennium Summit of United Nation in year 2000 adopted The Millennium Development Goals (The MDGs) which calls for a dramatic reduction in poverty and improvements in the health of the poor. Indonesia is one of developing countries which has about 33.1 million of total population live under poverty. Included part of this group are poor people, women and individuals with disabilities. For maintain and improve quality of life its people Indonesian government provided health services (Law No. 6/1974; Law No. 23 /1992; Law No. 4/1997). Further more , since 1999 its country set up health targets which called “ Health for Indonesia by the year 2010” that focused on 4 mission : a. activation of health oriented national development, b. increase and maintain individual family, community and environmental health, c. increase and maintain health services, d. support people to stay health based on their own effort (The Ministry of Health Republic Indonesia : 2000).
A research reported across the world, persons with disabilities are among the most under serviced people, in term of medical care and other services (Frye: 1993). Whereas individuals with disability are at above average chronic diseases (Nosek: 2000). It may because impairments and functional limitation present symptoms differently from persons without disability (Thomas:1999). ). Furthermore identified some health problems which common face women disabilities such as chronic urinary tract infection (UTI), depression, osteoporosis, restrictive lung disease, inflammatory bowel disease, heart disease, seizure disease and kidney disease ( CROWD: 1999). Indeed , health problems of women with disabilities may be complicated by gender. (Traustadottir : 1990) cited Menzt. et.al suggest stereotypes ascribed to people with disabilities and women, in general, condones passivity, dependence, helplessness and failure that these seem to be shared by general public and physicians, the result being that women with disabilities are less likely to be paid attention. Some evidences within literatures on health issues and concerns of women with disabilities may suggest this. (Morrow: 2000; Chappell :1996; Masuda: 1999; Fry :1993; Fawcett : 2000). However these reports mostly from western countries. Information about health of women with disabilities within developing countries limited , for example. (Ghosh: 2004; UN-ESCAP: 2002) and its information not in details so needed further research for understanding health problems related women with disabilities within different societies.
Therefore this study conducted to gather information life experiences and needs of women with disabilities related health in a developing country , in particular within Indonesian context.. The rationale behind this study is that though no comprehensive data available about women disabilities in this country that it would be expect the number of its population significantly high. National Board on Statistic reports (BPS : 2003) that more than 55 per cent of Indonesian population are women. Then, according to Department Social Affairs (2002) there was 45 person with disabilities in each 1000 population. Furthermore, a report stated number prevalence of injured among women higher than men .This repot also mentioned that prevalence transmitted diseases, maternal, prenatal and malnutrition among women higher compare to men. Further, the same report identified prevalence non communicable diseases on women higher than men at range age group of 15 to 44 year old (Budijanto et al. : 2000). In addition to these, another report suggest that Indonesian women more likely high mortality incidence caused of diseases related to women such as breast cancer, cervical cancer and postnatal (www.SinarHarapan.com). Given these evidences ones may imagine when such problems happened on women with disabilities that those may have had health complication caused of their disability conditions. Furthermore , The International Classification of Functioning Disability and Health (WHO: 2001) that suggest disability encompassed not only the physical or mental conditions that affect the body / mind but the ways in which environment create obstacles or barriers to those individuals with such conditions. It is imperative to describe how people live with their health conditions and to consider the intersections between health, body functions, activities and participation from a body, and the individual and social level These suggest that concerned of health Indonesian women need to pay attention seriously, including those are women with disabilities.
In order to gather information of needs women with disabilities this study conducted that chosen Indonesian paraplegic women. Choice its group as they may have “unique” problems of health and conditions both as female and with disabilities, especially related to their reproductive health.

Method and Participants

The study employed a qualitative research and collected data trough study literature, a group discussion of paraplegic women who are living at residential services, in depth interviews with them and those are living with family, and direct observation to women with paraplegic, their family members and services providers. Initially focus group was held and then in-depth interview’s which according to Grbich (1999) as the most appropriate technique to gain information on the perspectives, understandings and meanings constructed by people regarding the events and experiences of their lives. Semi-structured interviews and thematic categorization data provided to ensure all topics were covered (Patton:1987), and it allowed the participants to develop a topic, to identify the issues, and to give an indication of the language used in their setting (Kidder & Judd : 1986).

Participants of research were purpose selected consist of 4 women paraplegics those living at institutional rehabilitation and 3 women living with family. Their length of time had paralyzed more than 2 years.

Results

General Characteristics of women with disabilities in this study had paraplegia caused of motor accident, (4) workplace accident (1) , home accident (1) and unknown disease (1). Their range age between at 18 to 50 years old. Level education from secondary school to College/ university (4 at level junior high school, 2 at level secondary school and rest at level college /university). Status occupation : 1 government official , 4 unemployed , 2 self-employed). With regards marital status : 1 married , 1 divorced and 5 single. Live length had paraplegia range at 3 up 37 years.

The findings could be summarized into 4 themes . These themes were : a). Self expressed of conditions b). Health status; c). Health information and accessibility d). Social belief and religion matters; e). financial supports.
Self expressed of conditions
There were variety expressed of women with paraplegic in this study of their conditions, mostly tends to be submissive to their destiny. Take for example these testimonies:
• I am like just other women, what different is that I user wheel chair
• It is something that had to be, I have to accept it
• Life must go on
• I am sad, upset and angry, but do not know to whom I angry with.
• Just let it flow.
• Paraplegia….It had never come to my mind before but it happened to me, The God may have others plans to me….

Health status

When asked to express their health conditions, the majority answers is that “Just so so”. This kind of answer need further to be interpreted with other conditions. This contrast to others answered. For example group discussion identified some health problems they had, such as urinary , muscle spasm , swollen of legs, fever and skin problems around vagina. This group also mentioned catheters and diapers to control bladder. The oldest woman told she had many surgery treatments caused of stones within kidney and skin irritations during her live long paraplegic. A young woman told had a surgery for breast cancer. Almost all participants take medicines for relief pain and fever. Among participants only 2 of them mentioned take regularly medical examination, in particular for urinary tests.

In regards to reproductive health some questions be asked, namely, menstruation, child bear, sexual functioning, parenting, contraception, menopause and cancer related women. However not all these issues has been responded by the participants. There was a bite difficult to get information about these issues but then within group discussion it can disclosure a few things of these. All women told that the period of menstruation is trouble time for them to manage its hygiene, smell and leakage as it complicated with urinary problems. Some women told during the menstruation time more often arise spasticity and cramping. The oldest woman in this study had menopause a few years ago. Another married woman told that she under her husband permitted took sterilization . Most participants told that birth control is importance. for women with paraplegic however, unnecessary for sterilization, except when have children. Regarding child bearing, all participants said women paraplegic be able bear children. Married woman did not want to talk about her sexual activities, either single women in this study not gave their view about this issue. It can be understood within Indonesian culture sexual activities only for those married, even for married persons uncommon talk it opened.


Health Information and accessibility
Information related health preventive and treatment is very importance for those live long time with impairment such as paraplegics women. But, almost all participants felt that information for health care was lacking, particularly about reproductive health matters. “Gynecologist / obstetricians have not offered information about typically health reproductive. “, said a woman. Most participants released that before back home after injured they got some information for bladder and bowel management and some kind self physical exercises but not for reproductive health issues. For example a old woman who are menopause expressed she had depressed because of continue bleeding for long periode. She did not know before whether this is common on menopause women or not up seen a gynecologist. When be asked about risk of doing sex activities or pregnancy for women with paraplegic, only one of them have knowledge about that while others not know. This women said she know about that by read books and asked to doctors where she work (She is working at a hospital and used to be a nurse ). The participants were asked about importance for medical examinations, only two participants conducted its regularly. While others told as long as they did not complaint of their health condition they would not go to see doctor. The discussion group told if they have complaints of health they will ask firstly to friends those are paraplegic or family members. It suggest answered by a gynecologist who stated have no patients paraplegia to see him. While another physician told he would not gave information for health preventive and care, especially on reproductive health to women paraplegic or their partner if the clients not asked to him. Lacking information about taking health care of their reproductive functions some women felt fear to get married, it can be identified by a statement “despite I know I will be able to have a child but I am afraid if I had children with disability too”.

Beside lack of information, group discussion and other participants identified problems in gaining access to health services. “It was very terrible for me to get into table medical exam”, said the old women about her experiences saw the gynecologist at the time she had bleeding of her post- menopause. Another complaints no public transport available for wheel chair users. “Every times go to some where, we have to use taxi or car rental”. Two women told that she prefer for not go many where if not very important because of it will be terrible to find accessible toilets. A parent who sent his daughter to the institution gave reason that his house design and building were not accessible for her daughter who user wheel chair. In terms of accessibility, participants were not only indicate about, transportation, design of medical equipment and building and physical environment, but also the bureaucracy surrounding the accession of a “ health card” that entitling poor people to use of government hospital, in particular primary health care provider. “ I wanted the card. Everyone’s pulling out forms,… about this many!”

Social practices and cultural issues
Participants were asked to respond items regarding social practices or cultural. Most women think that rehabilitation center were the best place for them for live. Some family members of participants also stated same answer for the same question. Take one for example, “ everything will be easy for my daughter and for us if she stayed at Panti “ (institution for persons with disabilities). When asked about their satisfaction of services mostly answered satisfied. Within Indonesian cultural, women will be respected when she married and have children. Majority participants considered that women with paraplegic should be able to marry and have children, but when be asked to them about acceptance of men (men without disability) to have wife with disabilities, their answer doubtful. “As a women we just accept”, said some women. A woman told that she has boy friend, her boy friend just know that she user wheel chair and not about urinary problems. She never talked about this problem because of she afraid her boy friend will leave her. The divorced women within discussion group suggest that her husband left after she got paralysed. Another family member of participant told that men usually seeking wife who can serve him all in, it meant that women paraplegic not into account. With regards economic income, participants believed that family members (parents) responsible to handle their expenditures as they are unemployed.




Financial supports
Cost for health care and treatment is the most complaint of participants both those are living at residential services and with family. “Every things is money”, said one participant. They indicated many kind expenditures , such as bill for doctors, medicines, medical treatments like physiotherapy , medical examinations and laboratorium. Beside that they also expended money for transportation and devices for activity daily living, include for catheter or diapers. “Although I have job and salary I could not afford to pay all these thing”, said a woman. A young woman told although she covered by health insurance of her parent it just for little things not all. “The coverage of this health insurance just for a while, at the time I am 21 I would be any longer coverage by ASKES ( a kind health insurance for government official and family members). The group discussion who living at government’s residential services told that they received assistance from foreign donators for catheter and diapers. However, these kind of assistance depend on available donors as this statement. “Some times the donor come here and gave us job (handicraft works like making greeting cards)”. Costs problem be more difficult as most of them unemployed. Mostly they received money from family (parents) and one stated some times received money from her daughter. For those participants living at a government residential services , although some of them eligible for health subsides but its covered very limited amount. “Costly is one of the reason why I did not take regularly to see the doctor”, said a woman.

Discussion
Based on results present of this study reinforces the importance to understanding health problems of women with disability, particularly those paraplegics within a frame work socio and economics aspects , rather than restricted medical approach.

The significant findings of this study is the main expressed of women paraplegic which stated the submissive personality of their condition. With regards of their health conditions they see its as just so so, while in reality they appeared to the researcher to be abysmal. Some health problems in fact happened to them the ranged from fever, muscle spasm, urinary dysfunction, stones within kidney, skin break down , even cancer. This needed interpreted in term of service provision. It is possible these expression were reflection of a characteristics of the Indonesian personality who simply “accepts” without complaint (Lysak & Krefting: 1994). Beside that were no complaints of their health conditions by a statement “just so so”, it may reflection of a justified health problems to their life condition in order to make these problems become as “naturally”. In processing to make adjustment of these health condition into their live, ones may unaware that by time gone their impairment and disability can be worse. This situation could be seen on the case of the old women in this study who not only had urinary problems but stones within kidney, and took many times skin surgery on her back.

Results from this study found that women with paraplegic were lacking get information about health care, in particularly with regards their reproductive health and also inferior to get health services. It can be argue if women paraplegic and partner or family members did not have appropriate information about health care and accessing health services , this not only create new health problems of women paraplegic and make existing problems become worse but also in terms of acceptance this kind group women within society.

This study also found that mostly women with paraplegic obtained their main form income from family member. This is not surprising as most of them unemployed. This situation may typically within developing countries. Vitachi (1995) mentions that Asian people believe more strength in the family to provide welfare for people with special needs. However, in this study though family members gave financial support to their member with disability its could not covered many things of their expensive. For those living at institution some times they have jobs related handicraft, but this job temporary. This is a clear indication that to maintain health care and improve quality of life women with paraplegic the economics aspect need to be considered.

Results finding of this study identified that gender issues, especially related reproductive health care were not considered into rehabilitation setting. Physician and professional worker in health and social services being focused on their own discipline. For example, there were no programs available or information on women’s health in resident services. While in other side the physician been educated and focused on the disease, so disability aspects not encountered. This evidence can be seen by the statement of a women in this study who felt terrible get onto table for medical test of her reproductive function organs.

Because of this study had a very limited sample, findings this study on health situation of Indonesian woman with paraplegic may not be able to generalized. Women with paraplegic who participated in this study limited those live in Jakarta. Jakarta is the capital city of Indonesia which its city may offered many health care facilities. For those women paraplegic living out side Jakarta or rural areas the situation may have more complicated.



* The author is an activist disability movement and also an official government for The Ministry of Social Affairs Republic Indonesia. (evakasim@yahoo.com)

By : Eva Rahmi Kasim*
(Paper Presentation for 8th Annual Meeting of Globalforum for Health Research, November 2004, Mexico City, Mexico