Background:
Despite significant improvements, health status in Timor-Leste is poor. Low rates of use of public health services present a major challenge to improving the health of the people of the country. The Health Care Seeking Behaviour Study (HCSBS) was designed to improve understanding of the underlying issues and factors affecting the use of services, particularly in rural areas, and to provide an evidence base for future health policy, planning and programs.
This Study provides new and more detailed information about health care practices, including measures taken within the household, and preferences for health services at the village-level. It provides insights into the processes of decision-making and action in rural communities, including choice of particular providers or services—traditional and biomedical, and the various factors that influence those choices. In particular, the Study provides rich qualitative data in relation to three key scenarios: a child with diarrhoea, a difficult birth, and birth spacing. The Study also recorded, in some detail, provider perspectives, including the constraints experienced by government health service providers, as well as the views of users and providers on user-provider interactions. In addition to tables and figures, this Report seeks to present the voices of some of the research participants; these appear in boxes throughout the text and in the appendices where five slightly longer narratives are presented.
Methods:
The HCSBS built on previous research in Timor-Leste, including national surveys and qualitative research, and drew on international studies and theoretical approaches to health care seeking. The Study employed a mixed methods research design and involved field work in all 13 districts.
The HCSBS survey drew a sub-sample from the Timor-Leste Survey of Living Standards (TLSLS), to facilitate subsequent data linkage. Health care seeking data were collected from 535 household heads and 771 individuals—404 women and 367 men from these households. The HCSBS qualitative component commenced with 13 entry interviews conducted with village heads (xefe suco). In three of the 13 districts, in-depth interviews were carried out with biomedical and traditional health care providers (32 in all) and health facility users (29). In the remaining 10 districts, focus group discussions were held with married women, married men, adolescent females and adolescent males (38 groups with a total of 261 participants).
Results:
Long distances to health facilities discourage attendance, in particular for non-urgent conditions and preventive care, but also for severe conditions because the journey itself is perceived to contribute to deterioration in the patient’s condition. During the wet season, even short distances can become impassable. In some cases the long journey stimulates collective action, for example in relation to groups of women walking together to facilities to support and protect one another. In the case of serious conditions, as well as during delivery, even short distances may pose significant obstacles.
Economic factors further complicate access to health facilities. Various costs are associated with health care seeking. Traditional providers may negotiate a payment (kasu) for positive outcomes. In relation to government health providers there was no evidence of routine charging of fees. Government health providers did, on occasion, charge for privately administering a service or for
offering services out-of-hours. Costs were also associated with obtaining medications (traditional or biomedical) and referral to another health facility, including procuring transport and accompanying the patient to the facility.
Family members are very involved in health care seeking; both making and then enacting decisions about when and where to seek help. Neighbours and local authorities may become involved; carrying or transporting patients to urgently required services. A husband’s parents may be involved in decisions related to spacing children or using contraceptives. Relatives and community members are often involved in situations where ill-health was considered to be linked with traditional or custom matters.
Service users seek a number of elements within any consultation with government providers. Overall, they are looking for a comprehensive approach which treats them holistically and with respect. In addition, they have clear expectations about specific stages of the consultation process: reception/registration, examination, treatment (usually with medication) and referral. When they have travelled a long distance, they expect to be seen even if they arrive out of hours or without their registration card. In emergency cases, they expect to be seen when they arrive.
Users are discouraged from seeking help in the future by health worker anger and blame, and encouraged by demonstrations of empathy. In an examination, they expect to have a conversation about the history of the condition and to explore the possible causes and how to prevent this. In relation to treatment, users of health services had a number of expectations. These included being prescribed medication; having routine medications always available, especially for chronic conditions requiring repeats; receiving different medications for different symptoms; experiencing immediate effects; and receiving the same medication, if effective, when they next experience the same symptoms. Instead of completing the full course, patients may set aside some of the medicine obtained for use on a later occasion.
In deciding where to go for help, people appreciated facilities that were equipped with basic diagnostic and procedural equipment and staffed by qualified and well-trained staff; several indicated a preference for seeing doctors. A provider may recognise that the user’s condition is beyond the capacity of that level of health facility to treat, and recommend referral. In general, users did not perceive this as a problem unless delay in getting to the facility of referral resulted in a negative outcome. Many actually expressed satisfaction that the provider had the institutional support to refer to a higher level facility to increase the likelihood of a positive outcome. Positive views of services are conveyed to others; so too are negative experiences.
Parents recognise many of the danger signs associated with childhood diarrhoea and increasing severity. The initial response is typically at household level (homemade rehydration and/or boiled leaves) and only if diarrhoea persists, is the child taken to a health facility. Where health facility treatment is not effective, the family often suspects custom factors as the cause. Health facility treatment may be resumed after the custom matter is resolved.
It is generally assumed that most births will be normal and, therefore, able to take place at home with the support and assistance of family. While a traditional birth attendant (TBA) may assist, women and men do recognise difficulties and complications that are beyond their skills. Late recognition of problems, however, results in delay in getting assistance. Custom-related issues and social transgression by the husband, wife or family members were the most commonly perceived causes of difficult birth. Resolution of custom matters may be pursued concurrently while the woman is being taken to a health facility.
Women and men recognise the value of birth spacing in relation to the household economy as well as the health of the mother and child. Women usually receive information on methods from the health facility and inform their husbands. Where there is disagreement this is usually because women want to use, and men do not want to use, contraception. Disagreement can result in fighting, infidelity, and divorce. The husband’s parents may influence decision making due to considerations regarding bride-price. Concern about potential side effects, often based on what they have learned about other’s bad experience, and potential limitations on future fertility, discourages use of birth spacing methods.
Information about preventing disease was passed on mainly by health workers, and by xefe suco. Preventive behaviours by community members focused on avoiding contact with the sick, and the eating implements or sputum of the sick. Informants articulated considerable knowledge about hygiene and sanitation-related actions for diarrhoea prevention. A range of other health problems were also identified as preventable but most informants claimed they did not seek preventive health care. Some understood antenatal care as helping avoid difficulties, and had sought this care. In general, providers were aware of their preventive role and frustrated by the low level of community knowledge and preventive practice.
Health workers reported a range of limitations to delivering better services. Organisational and logistical constraints included lack of communication between facilities; delays in undertaking or providing outreach activities because of poor roads; unreliable drug supplies especially in the wet season; poor infrastructure including the lack of electricity for lighting and sterilising equipment; and the lack of training opportunities. Limitations in relation to provider-community interaction focussed on concern that providers may be blamed by community members in the case of a negative outcome; and frustration and anger at the perceived lack of community appreciation of the importance of prevention and early intervention. Some providers appeared to accommodate patient beliefs in custom as an underlying cause of illness.
Implications, recommendations and further research:
Overall, the HCSBS underscores the often restricted range of health care choices available to rural communities given the impediments of distance, cost and infrastructure. Treatment at home with traditional and/or modern medicines and (sometimes simultaneous) consultation with local traditional providers could be regarded as a logical response to limited access to government health services.
The findings clearly demonstrate the pressing need for greater communication and understanding between those organising and delivering health services, and the communities for whom those services are intended. The research has implications for improving access to, and demand for, quality services and strengthening management and support systems as strategic priorities for the Ministry of Health (MOH). Assuring consistent delivery of good quality comprehensive services is essential to building trust in the public health system.
Recommendations are directed at a number of key institutions and agencies.
Recommendations for the Ministry of Health
- Strategies to improve the quality of service delivery should emphasise patient-centred care.
- Government health workers should receive clear guidance on good practice in health services provision. Empathy, respect and clear communication should be more actively promoted and health care workers who are responsive to community members should receive recognition.
- Achievements and good practice should be regularly communicated to the community locally and nationally. The MOH should develop mechanisms to reward health workers at all levels for effective and innovative service provision, including through an annual awards ceremony highlighting achievements and promoting positive media coverage and discussion.
- Health worker education and training, for nurses, midwives and doctors, should be user and community-focused and should emphasise a holistic approach to health. This requires recognition of the mental, social, cultural and spiritual aspects of health, as well as the physical and biomedical aspects.
- Increase efforts to improve communication between service delivery and services, and community structures.
- Pilot and carefully evaluate innovative means of enhancing the community-service interface. This should extend beyond an exchange of information to establishing genuine partnerships for service development and delivery.
- Engage more actively with traditional birth attendants as they provide services to large sections of the community and would benefit from skills training and access to sterile equipment and supplies. Training TBAs to recognise problems, to refer early, and to avoid complications will benefit both mothers and children. Better planning for deliveries, and ensuring that skilled attendants are present, remains crucial.
- District managers should be given support and additional training to shape improvements in health care delivery and organisation. With the back-up of the policy and planning sections of the MOH, and regional advisors, these key personnel should focus attention on addressing the weaknesses within health care delivery. District managers should be empowered to ensure the availability of drugs, equipment and appropriate staff within services.
- Improve the ability of rural health care staff to perform through providing ongoing training and support, and enhancing availability of transport and reliable drug supplies.
- Identify ways to assist families to meet the costs associated with referral to facilitate access to appropriate levels of care.
- Capture lessons, adapt and scale up innovative and successful mechanisms to improve quality, access and acceptability of services, such as the triage system being developed at Guido Valadares Hospital in Dili and treating malnutrition using only local foods (Baucau).
- Health Promotion should play a stronger role in improving community understanding of prevention, the use of health care services, and the use of modern medicines. Community members should be encouraged to ask questions about their care and health providers should be trained to provide polite and informative responses. Promoting the engagement of men in birth spacing and improving community understanding of effective use of medicines should be a priority. Education around prevention of common health conditions, and early interventions to reduce severity and complications, should be taken forward. The MOH, working with local authorities, schools and development partners, should invest in, and evaluate, pilot interventions to improve health literacy.
- The MOH should identify one or more persons to assess the implications of this research for the workforce, local and expatriate, and for identifying how the MOH and key educational institutions can address weaknesses through the selection and training of health workers.
- This Report should be made available and used a teaching and learning resource for health workers being trained in Timor-Leste, Cuba and other countries. Resources should be sought to translate this report into Spanish to facilitate discussion of its contents by Cuban personnel providing services or training in Timor-Leste and Cuba.
- Educational institutions, with research and development partners, should explore questions raised by this research. Among these are questions related to the cultural and language competence of local and expatriate health care staff; improved understanding of the emerging private sector in health care provision, including pharmacists; and the need for detailed understanding of community responses to specific health problems and conditions in different parts of the country.
- The MOH should establish a research structure which will interface with researchers, play a major role in identifying research needs, and will ensure the integration of research findings in activities to improve policy and practice.
Recommendations for the Government of Timor-Leste
- Improve infrastructure – transport and communication – to assist with health, and other services, delivery.
- Ensure Ministry of Health and Ministry of Education collaborate on health-related curricula at schools and training institutions.
Recommendations for local government and communities
- Liaise with local and central government and development partners to develop strategies to facilitate access to services and improved transport for emergencies and referrals.
- In a number of pilot areas, work with Ministry of Health teams to identify innovative strategies to enhance health service – community interface and mutual respect.
Recommendations for development partners
- Support community and Ministry of Health initiatives to enhance respect and responsiveness to communities, and to improve access, equity and quality of services.
- Encourage innovation and evaluation of interventions to enhance health literacy and community participation and engagement in health issues.
- Provide support to MOH in acting on the recommendations above.
Research Team:
The team comprised of Australian and Timorese Researchers from a range of institutions - The University of New South Wales, Timor-Leste Ministry of Health, Alola Foundation, and the National Statistics Directorate.
Contacts:
Any enquiries or comments regarding this publication should be directed to:
Professor Anthony Zwi: a.zwi@unsw.edu.au.
Dr Ilse Blignault: i.blignault@unsw.edu.au.
Timor-Leste Health Sector Resilience and Performance in a Time of Instability 2007
Research Report
Complete Report
Background:
One of the major impacts of the conflict in Timor-Leste during 2006 was massive population displacement in Dili and surrounding areas. Up to 150,000 people were forced from their homes to live in IDP camps, with relatives, in churches or in schools. Alongside insecurity and population displacement was significant disruption to essential services including health.
Aim:
The purpose of the study was to document the broad impact of the turmoil and instability on the health sector. While some services functioned well, others faced considerable challenges and disruption. The research identified key lessons and insights surrounding successes and obstacles experienced when providing and coordinating health services during the period of instability. It is hoped that the research results will strengthen the health sector in Timor-Leste and be of relevance to long-term disaster and emergency planning in Timor-Leste and other countries.
Approach:
Building on existing data and analyses, a team from Australia and Timor-Leste conducted extensive research (including: document analyses, site visits, observations, interviews, and focus group discussions) in Dili and peripheral districts. The Timor-Leste Ministry of Health, UN agencies, health service providers, local and international NGOs and key stakeholders (including affected communities) were consulted. The research was conducted over 6 months from July 2006 to Decemeber 2006.
The research was supported by the Ministry of Health, Timor-Leste, and funded by AusAID. It was, however, independently conducted by the SPHCM. Reporting of results and recommendations will be presented in workshops and publications. Practical recommendations will aim to feed into the policy and coordination structures. Comments and advice from stakeholders will be welcomed.
Research Team:
The team comprised of Australian and Timorese researchers from a range of institutions - The University of New South Wales, Universidade da Paz, Menzies School of Health Research (CDU); and The Australian National University.
Contacts:
For further information about the study please contact:
Professor Anthony Zwi (Team Leader): a.zwi@unsw.edu.au.
The research report produced is available for download below.
Research Report:
Timor-Leste: Health sector resilience and performance in times of instability
Useful Resources:
The research team have amassed a considerable database of reports and articles to provide background and context to the research. Please contact the research team with Enquiries for a list of interesting readings.
Useful links:
Other resources of interest: