Romania The main objectives of the project were to:
• assess and improve Roma knowledge of community health issues, TB in particular;
• facilitate increased Roma access to public health services;
• build advocacy capacity, by developing skills and mobilizing networks of stakeholders, both from Roma communities and government and other authorities; and
• develop advocacy strategies that will create a more enabling environment for Roma health.
The project, implemented within the framework of a broader three-year TB control programme (with USAID as the primary donor), focused on the development and implementation of a national health education strategy for TB control. It sought to broaden the impact of HealthRight International’s TB health education activities within Roma communities, by supporting several levels of Roma participation in health promotion activities.
The main project sites were Bucharest, Constanta, Ilfov and Neamt counties, which comprise about 16% (National Institute of Statistics, 2007a) of the Romanian population and 17.7% of its TB burden (National TB Control Program, 2006).
The project reached 11 530 benefi ciaries with community-based TB education. In addition to education, the project identifi ed people suspected of having TB and provided treatment support to patients, and/or their families, to encourage adherence or testing of family members. As a direct result of this project, a total of 607 community members with symptoms of TB were evaluated for the disease and 49 (8.1%) new cases were identifi ed. An additional 450 contacts were referred for evaluation, and 69 individuals were accompanied to see a medical provider.
The fi nancial resources required were secured from two main sources: (a) the Ministry of Public Health, through the National TB Control Program, supported diagnosis and treatment, as well as the cost of health professionals involved; and (b) USAID and OSI, through HealthRight International, supported training of peer health educators (PHEs) and health professionals, elaboration and dissemination of information, education and communication materials, and project management staff. All necessary health services were provided by the health system through a specialized network of TB specialists and laboratories, as well as through local family doctors.
The PHEs were selected from local Roma communities and were trained to provide information and new skills to the benefi ciaries. At the end of the project, some PHEs were also hired as Roma health mediators. The Roma health mediators are employees of the Ministry of Public Health, and their main role is to foster mutual trust between the public health authorities and Roma communities, by facilitating communication between members of the community and medical staff. At the level of policy-making and stewardship, the project provided important feedback and input for adapting and reshaping the National Tuberculosis Control Programme.
At its start, the planning process for the project defi ned TB baseline knowledge, attitudes and practices among 153 Roma in Bucharest, Ilfov and Neamt counties. The research found the following.
• Just over half the people surveyed had heard of TB.
• Only 15–30% could recall symptoms of TB.
• Half did not know that TB was contagious.
• Of the respondents, 43% did not know that TB could be treated.
• A third of the respondents believed that TB could be transmitted through food or objects.
• Fear of losing work was an overwhelming reason not to disclose TB status (> 70%), with social isolation a close second (> 50% avoided visiting acquaintances with TB).
• Less than half would tell their families of their disease status, as they were subjected to pity, avoidance and rejection.
The project continued with a rigorous mapping of the communities, to identify potential sites appropriate for project intervention, such as those with a large population of Roma with little access to health services. To gain access, HealthRight International did substantial legwork and made substantial efforts to develop trust. The educational campaign was supported by a variety of
Fig. 15.1. Information, education, and communication materials: manual, posters, brochures
Source: HealthRight International (2005). Reproduced with the permission of the copyright holder.
A signifi cant result of the project is the development of a Roma TB information, education, and communication kit, based on the materials developed. The kit’s master materials and design, as well as 200 copies, were provided to the Ministry of Public Health for its work with Roma health mediators.
From targeted Roma communities, 40 PHEs were selected and trained. Of those 40, 28 who demonstrated appropriate skills and commitment were retained to lead peer education activities in their communities.
The peer health educators (PHE) training curriculum was developed through a process of consultation and feedback, as was the script for the PHE-led community education sessions. In general, the sessions consisted of about 20 community members being shown a fi lm, followed by discussion (facilitated by the PHEs) of different prevention, diagnostic and treatment aspects of TB. Complementary print materials were also prepared to reinforce the information on TB symptoms, transmission, diagnosis and treatment. PHEs encouraged people with symptoms of TB to seek diagnosis and proper treatment if they tested positive.
Also, the PHEs provided treatment support to patients, either by accompanying them to the doctor’s offi ce or encouraging family members to support them to do so.
The project was thoroughly evaluated. The objectives of the evaluation were to:
• ascertain the information level for TB within the communities involved in the project (Bucharest and Ilfov and Neamt counties);
• identify the attitude towards TB of the members of these communities, to decrease its stigma and increase concern for treatment; and
• compare changes with the baseline study and with a control population.
For the evaluation objectives, a pre-experimental, static group design was employed. This is a two group experimental design:
informative, educational materials in various media (such as print and video), which were pretested on the target audiences.
During the fi lming of a video, the team found the face of the Roma for the larger media campaign, Mr. Busuioc, whose picture was also featured on other project materials (see Fig. 15.1), as well as in a Lancet medical journal article (Sepkowitz, 2006).
Mr Busuioc is a cured Roma TB patient who was recruited to serve as a spokesperson for the importance of completing TB treatment. He was chosen to represent the campaign after he was interviewed for the TB education fi lm and proved to be open and charismatic when speaking about TB.
Romania
Table 15.2. Indicators of TB
a This is signifi cantly higher than the non-exposed population, based on the tests of between-subject effects, from a multivariate analysis.
Source: HealthRight International (2005). Reproduced with the permission of the copyright holder.
Indicators Mean non-exposed
(n = 151)
Mean exposed
(n = 149) Maximum score Mean at random answer
Knowledge of general aspects of TB 12.20 12.20 24 11.20
Knowledge of TB treatment 7.93 8.47 a 13 5.23
Knowledge of TB symptoms 6.70 6.60 11 5.50
Knowledge of TB transmission 10.09 10.79 a 16 7.00
Overall knowledge (general + treatment +
symptoms + transmission) 36.93 38.12 a 64 28.93
Attitudes (general attitudes and attitudes
towards potential stigma) 8.58 8.32 13 4.33
Practices (when TB revealed and when
hospitalization needed) 9.08 9.42 a 10 3.33
one group (called exposed or experimental group) is subject to the treatment (in this case, the information, education, and communication intervention) and the other (called non-exposed or control group) is not. Measurements on both groups (exposed and non-exposed) were made after the information, education, and communication intervention. For the sampling method, the test units were not assigned at random.
To measure and analyse knowledge, attitude and behaviour towards TB more consistently, indicators were developed. The resulting information is synthesized in Table 15.2. For further information about these indicators please contact the authors.
The comparison between the exposed and non-exposed population on the key indicators revealed that, in terms of knowledge of TB treatment and TB transmission, the exposed respondents are better informed than the non-exposed ones and that they are more likely than the non-exposed respondents to behave in the appropriate way if they had TB.
Before the intervention, the Ministry of Public Health had fi nanced the diagnosis, treatment and health promotion activities through two main national programmes (the National Tuberculosis Control Programme and the HIV/AIDS Programme).
The health promotion activities, however, were not targeted at groups at risk and/or vulnerable communities but rather were targeted at the general population. During the project the external partners of the Ministry of Public Health (HealthRight International, supported by USAID and OSI) funded all the targeted information, education, and communication activities.
After the project ended, the Ministry of Public Health took over the fi nancing of the targeted health promotion, as well as some of the skilled PHEs as Roma health mediators, thereby moving the intervention towards sustainability.
The project successfully created linkages between PHEs and municipal authorities. Advocacy training assisted PHEs in better understanding various laws and statutes associated with health and social services. Also, in all the activities that focused on developing capacity within the health system, the project incorporated discussions on outreach to Roma communities. This was included in training on working with vulnerable communities, which was integrated into the overall TB training for private sector providers. HealthRight International also used its own partnership with local authorities to promote PHEs, who were often invited to speak at programme-related meetings and a conference and were introduced as key contacts for accessing Roma communities. During the course of these activities, PHEs also learned about the scope of other social problems in their communities, including the lack of identity cards and health insurance, low school enrolment of children, and unhealthy housing.
The project never intended to create or introduce separate health services for the target population, knowing well that such services would have been regarded as additional stigmatization. All the health services promoted during the project were offered within the Romanian public health system.