While clinical research and retrospective studies of ART outcomes are well established in Indonesia social research into infertility and its treatment is still an emerging field. The data presented in this article was generated by the “Survey of Indonesian infertility patients’ reproductive knowledge and health seeking behaviour” conducted between July and September 2011. This exploratory study was innovative in the Indonesian context because of its explicit focus on patient perspectives on infertility treatment, which have been absent in prior research. The survey was developed and administered in the national language - Bahasa Indonesia. Formulating and refining survey questions was a collaborative process involving fertility consultants, survey interviewers and volunteers who took part in piloting the survey. The final tool included 110 variables arranged in five sections, which were: 1) socio-demographic data of female participants and their current husbands; 2) female patients’ sources of knowledge about human reproduction and infertility; 3) female patients’ actual knowledge of reproduction and infertility; 4) female patients’ and their husbands’ experiences of biomedical infertility treatment; and 5) patients’ perceptions of their needs in relation to infertility care. This article focuses on data collected in sections 1 and 4 of the survey.
All respondents were infertile women recruited through invitations posted at three infertility clinics in the cities of Jakarta, Surabaya and Denpasar. The sample is therefore self-selected and not randomly selected. The criteria for participation were that women be married and aged between 18 and 45 years, had experienced infertility problems and were currently seeking biomedical treatment, and finally that women were not undergoing IVF programs at the time of the survey. The decision to exclude women undergoing IVF was to ensure that their treatment could not potentially be impacted upon by an increase in stress hormones related to recounting their experiences or feelings about infertility during survey interviews.
Surveys were completed by a total of 232 participants and data was coded by hand and then entered into STATA. A preliminary coding frame was developed prior to data collection and later revised to reflect the actual range of responses received. After cleaning the data 20 surveys were eliminated leaving a final sample size of 212 for analysis. Descriptive statistical analysis was then performed by two statisticians, to allow cross-checking for accuracy. No bivariate or multivariate methods were used in the analysis produced for this paper.
The decision to focus this initial study of Indonesian infertility patients on women was both pragmatic and political. Firstly, women seek out infertility treatment at higher rates than men in Indonesia and are thus more easily accessible as research participantsf. Secondly, in previous studies with fertility patients in non-Western settings women have been found to be more willing and forthcoming research participants than men . Thirdly, the psychological distress and social suffering reported by Indonesian women experiencing fertility difficulties is greater than that reported by Indonesian men, thus an initial focus on women acknowledges this asymmetrical impact of infertility on themg,h. However, this study did collect some data regarding men’s participation in infertility treatment, as reported by their wives.
The choice of which infertility clinics to recruit through was based on the available funding, which was adequate for only three sites, and the desire to include clinics that service clients from a range of socioeconomic groups and geographical areas. The clinics chosen to be involved in the study are situated in different cities and different provinces. The Jakarta based clinic is situated in an elite private hospital and tends to attract clients with a very high income. In Surabaya the chosen clinic is situated within a university teaching hospital and tends to attract both mid to lower income clients. The Denpasar based clinic is situated within a regional public hospital that primarily services clients who cannot afford to pay for private services. Recruitment of respondents was relatively even across three sites - 35% from Jakarta, 36% from Surabaya, and 29% recruited in Denpasar.
When we analyzed the survey sample we found it to be highly indicative of the sub-population of Indonesians who have the easiest access to infertility care due to their affluence, proximity to services and higher levels of education. The sample was comprised of 78% urban residents, with the remaining 22% living in rural areas or poor urban fringe communities on the outskirts of large cities. The ages of women respondents ranged between 18 and 45 years and the median age was 31 years. All women in the sample were literate and 86% had completed senior high school or some form of tertiary education, and 60% possessed a tertiary degree of some kind. Thus, the formal educational attainment of women in the sample was very high, considerably higher than among the broader populationi.
Income levels among the sample were not reflective of national patterns of income distribution. Indonesia’s national median monthly income is reported to be US$260 and 29% of the population is still classified as living under the poverty line - earning less than US$28 per month . Monthly household incomes among our respondents were more skewed towards higher socio-economic groups with 50% of the sample being classified as middle class or elite on the basis of their monthly house hold income alone. In a nutshell, our sample was well educated, affluent and predominantly urban. This confirmed our expectations that women with lower incomes, less education and those living in more remote areas would be less likely to access infertility clinics, and subsequently would be less likely to be recruited for the survey.
Research participants were supplied with plain language information sheets about the research and asked to provide voluntary written informed consent before interviews were conducted. All respondents were made aware of their rights to skip any questions they did not wish to answer, and to withdraw from participation before survey interviews were concluded and their de-identified data was stored. The interviews were conducted in private counseling rooms and took between 30 and 45 minutes. Anonymity was protected by ensuring that participants’ names were not recorded on survey forms and by storing consent forms separately from completed surveys. The La Trobe University Human Ethics Committee granted principle ethics approval in Australia in May 2011 (HEC 11–011, approved 24 May 2011)j. A team of 14 female interviewers who were all doctors, and who received intensive training in research ethics and interviewing techniques, conducted the survey interviews. None of the interviewers were treating doctors of survey respondents. The choice to have interviewers and interviewees of the same gender enhanced rapport and the ease with which respondents discussed their reproductive health. Following each interview respondents were given an information booklet to take home that contained the correct answers to all of the knowledge questions in the survey, and an overview of the prevalence, causes and treatment of infertility in lay language.
Below we present our findings on a range of factors relevant to accessing infertility care, including: 1) the timing of initial presentation to obstetrician/gynaecologists (OBSGYN); 2) the types of providers visited by fertility patients and patterns of referral; 3) the number of OBSGYN visited by patients and their rationale for seeing multiple providers; 4) men’s participation in infertility care; 5) barriers to access reported by patients; 6) patterns of travel for infertility care; and 7) cost and access to care.