Fundacion Totai continues
to see the development of
its Program for the
Prevention of Hearing
Impairment (PPHI), the
first of its kind in the whole
of Bolivia. For more
information click on the
following links:
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Programme for the
Prevention of Hearing
Impairment
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John 15:8 - "This is to my Father's glory, that you bear much fruit, showing yourselves to be my disciples."
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Abstract:
Beni State is situated in the North-East of Bolivia, the poorest country in South America. It lacks several necessary components
for the existence of a National Programme for the Prevention of Hearing Impairment: There is no universal Health Care available
due to lack of human, financial and logistical resources. There are no published population based studies to determine either
incidence or prevalence of Hearing Impairment in Bolivia. There is no register of people with hearing disability or a National Health
Service Technical Committee. There is no national project for the prevention, early detection and rehabilitation of deafness, or for
the promotion of ear and hearing health in the general community.
In a study performed in 2004, from 64 children attending Trinidad-Beni’s School for the Deaf, only 7.81% were diagnosed before
2 years of age. Average age for definitive diagnosis was 9 years 1 month. Time elapsed between family suspecting deafness and
educational “integration” averages 9 years 2 months. Time elapsed until family suspicion of Congenital Hearing Loss was 2 years
4 months. The most alarming factor in late diagnosis of congenital hearing loss was the delay between relatives suspecting
deafness and specialist consultation (5 years 3 months).
With this background and the perceived need for the establishment of a basic public health structure, it was decided to develop a
project to address the ear and hearing health situation in Beni State. In 2005, a Bolivian charity based in Trinidad-Beni with
emphasis on health provision and children’s sports, Fundación Totaí, was approached by CBM-Christoffel Blindenmission, a
Germany based International Charity with focus on programmes helping people with disabilities in developing countries. A
partnership was established with the purpose of developing a Programme for the Prevention of Hearing Impairment in the Beni
State, within the framework of Fundación Totaí alongside the expertise and support of CBM.
In this article we explain our experience in the process of setting up such a programme. We detail the structure, personnel,
equipment and finances we have found are indispensable before embarking on such a venture. The selection of main strategies
and their respective activities, according to the perceived needs, are listed. Difficulties encountered and early lessons learnt
during the first year of its implementation are also included.
Our view is that, for a National Programme in Hearing Impairment Prevention to materialize in Bolivia, it will be necessary to join
the efforts of resident health professionals, external aid agencies and health authorities at local, regional and central government
level. The way forward to alleviate the burden of hearing disability depends upon the coordination of activities for Primary,
Secondary and Tertiary prevention of ear disease and hearing impairment. To fully integrate such a programme into a National
Health Service for all, in Bolivia, will probably have to be seen as a long term goal.
Keywords: Hearing Impairment, Prevention, Programme, Bolivia
Introduction:
Bolivia is a multicultured landlocked country, situated in the heart of South America. It has an extension of 1,098,581 Km2 and a
population of 9,427,219 (Growth rate: 1.5% and Density: 8.6 Hab./ Km2). Its geography varies from the arid highlands of the
West, with cities located above 4,000m. asl in the midst of the Andes mountain range; to the fertile lowlands in the East, where
Beni State is situated at 155m. asl. Beni occupies 19% of the country, it extends over 213,546 Km2 of Amazon prairies, with a
disperse population of 406,982 (Density: 1,9 habitant per km2; Growth rate: 3.35%). Literacy rate in 2003 was 86.7% (93.1% for
males and 80.6% for females). Bolivia is the poorest country in South America. It is included in the United Nations Initiative for
Heavily Indebted Poor Countries (GDP: 25.95 Billion $US, GDP per capita: 2,900 $US and 4.9% Inflation Rate). Birth rate 23.3
/1000 habitants, Infant Mortality 51.8/1000 live Births. Life Expectancy 65.8 years. Bolivia has the lowest number of deliveries
attended by health professionals and the highest maternal mortality in South America: 229 for every 100,000 live births. Neonatal
and infant mortality (under 1 year) are 27 and 54 per 1000 live births, respectively1.
Bolivia lacks several components necessary for the existence of a National Programme for the Prevention of Hearing Impairment:
There is no universal Health Care available due to lack of human, financial and logistical resources. There are no published
population based studies to determine either incidence or prevalence of Hearing Impairment in Bolivia. There is no register of
people with hearing disability or a National Health Service Technical Committee. There is no national project for the prevention,
early detection and rehabilitation of deafness, or for the promotion of ear and hearing health in the general community.
Background:
In a study2 performed in 2004, from 64 children attending Trinidad-Beni’s School for the Deaf, only 7.81% were diagnosed before
2 years of age. Average age for definitive diagnosis was 9 years 1 month. Time elapsed between family suspecting deafness and
educational “integration” averages 9 years 2 months. Time elapsed until family suspicion of Congenital Hearing Loss was 2 years
4 months. The most alarming factor in late diagnosis of congenital hearing loss was the delay between relatives suspecting
deafness and specialist consultation (5 years 3 months).
Also, in a report by M. Guevara3, on people living with disability in Bolivia, it was stated that only 1.6% of persons with Disabling
Hearing Impairment are included into educational or work productive settings and only 6% of the population living with a disability
or learning difficulty are integrated in Bolivia.
With this background and the perceived need for the establishment of a basic public health structure, it was decided to develop a
project to address the ear and hearing health situation in Beni State. In 2005, a Bolivian charity based in Trinidad-Beni with
emphasis on health provision and children’s sports, Fundación Totaí4, was approached by CBM-Christoffel Blindenmission5, a
Germany based International Charity with focus on programmes helping people with disabilities in developing countries. A
partnership was established with the purpose of developing a Programme for the Prevention of Hearing Impairment in the Beni
State, within the framework of Fundación Totaí alongside the expertise and support of CBM.
Methods:
This article describes our experience in the process of setting up a Programme for the Prevention of Hearing Impairment (PPHI) in
the Beni State. We detail the structure, personnel, equipment and finances we have found are indispensable before embarking on
such a venture. The selection of main strategies and their respective activities, according to the perceived needs, are listed.
Difficulties encountered and early lessons learnt during the first year of its implementation are also included. Four main
information sources were sought for guidance in the development of the PPHI-Beni, as follows.
1. Local deaf population study2 and service provision data as background starting point
2. 2nd Regional Deafness Prevention Workshop resources, Costa Rica, November 20046
3. CBM’s expertise and field visit to Bolivia of senior ENT officer in August 2005
4. Interview with relevant Bolivian Health Authorities and professional Bodies
Results:
1. Local deaf population study2 and service provision data as background starting point
Lacking resources to carry out a population based survey, we settled for collecting the available data in the country. We found
there was no data for Beni State except from our own sources, and the little data available for Bolivia was either self reported or
indirectly related to the health aspects of hearing impairment. A decision was taken to establish our initial reference data source
upon the study of the population attending the local school for the deaf in Trinidad-Beni, results are mentioned in the
“Background” section. Subsequent attempts to evaluate the situation in Beni have used alternative data gathering methods which
do not demand the comprehensive setting necessary for a population based study, but obviously offer limited information. These
methods are described in the article “Data recollection at Programme for Prevention of Hearing Impairment in Bolivia - Assessing
the population needs and prioritizing interventions”,7 by this same author.
2. Resources from 2nd Regional Deafness Prevention Workshop, Costa Rica, 20046
These resources proved to be very useful in the gathering of ideas about where and how to start. Upon provision of the material
from the 2nd Regional Deafness Prevention workshop by CBM’s Office in Quito, Ecuador, we analysed WHO & CBM’s advice
about the different components a Programme for the Prevention of Hearing Impairment should include. We assessed the
availability of resources already in place in the Beni State and considered which components would need implementation afresh.
Workshop material indicated the following approach.
Phase One: current situation analysis.
1. Collect available data
2. Conduct Population-based Survey of prevalence, causes of deafness and hearing impairment.
Phase Two: Development of Programme for the Prevention of Deafness and Hearing Impairment.
1. Appointment of coordinator for the programme.
This task was assigned to Fundación Totaís’s ENT doctor.
2. Selection of a multidisciplinary team.
A group of selected professionals were invited to attend the first local workshop, aiming to present the project to a wide range of
health and educational professional and identify the people who could potentially become the main contributors to the
materialisation of a PPHI. The initial team included the following 12 professionals:
1 Administrator
1 ENT doctor (also Coordinator)
1 Paediatrician
1 Obstetrician-Gynaecologist
1 General Practitioner (Family Doctor)
1 Nurse
1 Audiologist / Speech Therapist
1 Audiometrist
1 Teacher for the deaf
1 Educational Psychologist
1 Psychologist
1 Social Worker
3. First Workshop.
This took place on 9th June 2005, and included the following topics:
1. Introduction to the Ear, Hearing and Deafness
2. Results of local situation analysis
3. Types, levels and opportunities for Prevention.
4. Possible priorities for prevention
5. Brain storming on formulation of the programme
The outcomes of the first workshop were as follows:
1. Usage of already established health promotion mechanism, such as:
a. Primary Ear and Hearing Care: Based at Health Centres and H. Posts. (GPs)
b. Health Education / Promotion: Public Health nurses and “health visitors”
c. Infectious Diseases surveillance: Health Board and its Rural branches
d. Immunisation: Public Health Programmes
e. Maternal Health and Prenatal Care: Mother & Child National Health Insurance
2. Establishment of new mechanisms and services within the Programme:
a. Screening and early detection: PPHI
b. Genetic counselling: PPHI
c. Hearing conservation: PPHI
d. Hearing Aids maintenance: PPHI
e. Educational services: PPHI
f. Secondary / Tertiary level services: PPHI
g. Training at al levels: PPHI
4. SECOND workshop.
This took place on 30th June 2005. Priorities and Strategies for the implementation of mechanisms and services “within the
programme” were discussed, paying attention to activities already in place at the Base Health Centre which could be modified or
widen to include the PPHI scope. Special attention was given to conditions with high prevalence and/or effectively preventable.
Opportunities, target population, activities, specific tasks and required level of training for the people responsible were agreed.
See Table 1.
In summary, all activities proposed could be framed within 2 main priority strategies:
1. Raising public awareness of ear and hearing health and the PPHI
2. Following a Public Health Approach for all levels of prevention (WHO description):
a. Primary Prevention
b. Secondary Prevention / Early Detection
c. Tertiary Prevention / Rehabilitation
d. Teaching / Training at all levels
e. Data gathering and interpretation
3. CBM’s expertise and field visit to Bolivia of senior ENT officer in August 2005
During 7 days in August 2005, the Project received the visit of Dr. Piet van Hasselt, CBM’s ENT specialist, with a wide experience
in setting PPHI in several developing countries. His knowledge and expertise was essential to determine specific practical and
material needs, as well as adding greater credibility when presenting the Project before local and National Health Authorities.
From his consulting visit, the following points were established:
3.1. Regional and National situation background
Already detailed in this article, under the heading “Background”.
3.2. Estimated Prevalence of ear disease and hearing impairment (preventable proportion):
The prevalence of disabling hearing impairment was estimated to be between 4 and 6%, half of which was deemed preventable.
3.3. Situation of Ear and Hearing Care in Beni:
• There was no ear and hearing care except for a, by then, preliminary, service at Totaí Health Centre. Also general health
care service is poor. Hospitals and clinics are regularly on strike.
• Besides Totaí’s ENT specialist, there are 2 other ENT-specialists in Trinidad and one in the city of Riberalta, in the North.
None of these last three have a special interest in ear and hearing care or in prevention of hearing impairment.
• There is no ear surgery being performed.
• Hearing instruments are only being fitted at Totaí clinic, with support of Liliane Fonds (NL).
3.4. Situation at Fundación Totaí and the Health Centre:
Human resources available
Equipment, instruments, medications and materials available
ENT and Audiological services available at main base
Other health programmes running
Bureaucratic obstacles
Self sustainability
3.5. Activities
The planning of the Programme was discussed. It was agreed that all types of ear and hearing disorders and grades of hearing
impairment will be included in the Programme.
The project proposal, the budget application and the 4 year plan were prepared and sent off to the Regional Office.
3.6. Project proposal:
The corner stones of the programme consisted of:
• Ear care
• Audiological service
• Screening programme
• Ear surgery
• Training of health care and community workers
• Public awareness campaigns
• Integration in public health care
• Outreach programme
Final assessment expressed that this project could develop into a comprehensive programme, fully in line with CBM’s Policy and
WHO guidelines on Prevention of Hearing Impairment.
3.7. Detailed Budget plan included:
• Essential equipment, consumables and medicines for ear care and surgery.
• Estimated monthly running costs.
• Staff training costs.
3.8. 4 years plan:
• It was understood that in the course of 4 years the programme will expand gradually to cover more of Beni State. The
magnitude of the expansion dependant on the availability of human and financial resources.
• In this period, the projection was to build a new clinic with surgical and in-patient facilities on already acquired premises. Co-
funding was being sought.
• When feasible, a population-based survey will be done, using the WHO protocol.
3.9. Arrangement of surgical facilities:
It was arranged to accommodate ear surgery at one of the local public hospitals (1 operating session per week), until surgery
could be performed at the base. It was agreed that the programme would hold 1 ENT clinic a week at the hospital. Ear surgery
could start as soon as equipment arrived.
3.10. Other arrangements:
• Assistance was needed to set up an appropriate audiological service, including an ear mould lab.
• The Programme’s ENT doctor needed to revive his surgical skills as he had, unwillingly, been out of practice for some years,
due to bureaucracy in his specialist accreditation in Bolivia.
• The local Programme offered to translate WHO/CBM’s “Primary Ear and Hearing Care” Training Resource (Basic,
Intermediate and Advanced levels) into Spanish.
• It was agreed to write an article on the Programme’s study on deafness in Beni for the third issue of Community Ear and
Hearing Health.
• Support from an external ENT surgeon was requested for the time of commencing ear surgery.
4. Interview with relevant Bolivian Health Authorities or professional Bodies:
Before commencement of any activities specifically related to the PPHI-Beni, the following official bodies, institutions or
professionals were approached:
June 2005: Regional Health Board Director (no longer in post)
Trinidad’s Town Hall Major
Overseer of the largest health and community aid international Charity in Trinidad
Local neighbourhood leaders
August 2005: 2 only other ENT doctors in Trinidad-Beni
All 4 local Hospitals’ directors
Director of Hospital most likely to provide an operating theatre (no longer in post)
President of the National ENT Association, in Sucre (no longer in post)
President of the National College of Audiologist, in La Paz (no longer in post)
Minister of Health in La Paz (no longer in post)
Sept. 2005: New Regional Health Board Director (no longer in post)
Regional Government Committee for Childhood protection
The general reception of the project for a PPHI in Beni State was very positive. The advice received from the Health Minister’s
Office regarding steps to consolidate such a programme, where there was none similar in the country, was especially helpful.
From other professional bodies, the difficulty for them to perceive the PPHI as a priority in their agendas was obvious. That,
together with the high rate of changes in key posts, inclined us to commence the programme at local level, based on the existing
charity setting (Fundación Totaí). This modality was chosen in the hope of approaching them again, once the PPHI was up and
running.
Programme Evaluation:
One year after the official establishment of the Programme for Prevention of Hearing Impairment in Beni State, we can already
appreciate some fruits of the work, and also perceive some deficiencies and difficulties. We share our self evaluation and lessons
learnt, for the benefit of other projects which may be about to commence or at an early stage of its development.
Achievements during the first year of the Programme for Prevention of Hearing Impairment:
Total ENT consultations (5 half time sessions per week): 3,350 (Average 19.6/ses)
Ear and Hearing problems’ consultations and screening: 2,936 (88% ENT total)
Total Audiology consultations: 2.778
Total Audiometric tests: 2.354
Hearing screenings (Audiologist or audiometrist) 1.901
Total Hearing Instruments (Aids) provided: 88
Total Hearing Aid Moulds manufactured: 124
Days worked in the community (by ENT / by Audiologist): 104 (46 / 58)
Ear operations (only those possible under Local Anaesthesia) 14
People immunised against Rubella 165
In house workers trained in Bolivian Sign Language 11 (8 level I,3 level II)
Health workers trained in Primary Ear & Hearing Care 6 (Basic/Intermediate)
Workers trained in Community Based rehabilitation 2
PPHI informative programmes in the media (local TV) 4
Health Fairs in the Community 2
DETAIL OF EAR AND HEARING SCREENING (by ENT officer and/or audiologist):
Pre-school screening (includes neonatal age): 3 Centres; 663 children
Mainstream Schools (Primary/Secondary): 3 Schools; 858 students
Special Education (Deaf, Blind, Motor, Intellectual): 7 Centres; 179 students
Factories with high level of background noise: 5 Factories; 258 workers
Screening in the community: 4 Programme; 167 people
Total Screenings: 22 Institutions; 2,125 people
Difficulties encountered within the Programme (weaknesses):
Inexperience in Public Health Programmes at large scale
Shortage of personnel for Promotion and Training in Primary Ear and Hearing Care
Serious shortage of Administrative Personnel (administrative burden increases proportionally
to the service demand)
Limitation of equipment and instruments (economic challenge and market availability)
Difficulty obtaining Hearing Aids at low cost and reliable suppliers
Inadecuate working premises (New Centre under construction)
Growing waiting list for ear surgery (regular surgery sessions have not yet commenced)
Circumstantial difficulties encountered in our local setting:
Lack of public awareness to attend for a first time or follow up appointment
Difficult physical access during rainy season (dirt roads and disperse rural population)
Rapid growth in demand for PPHI provision services (specially urban area)
Difficulty in locating adequate operating theatres for PPHI (future plan to build our own)
Difficult participation of the other local otorhinolaryngologists
Lack of real commitment from Regional Health Authorities
Early lessons learnt during the first year of implementation
Dedicated Human Resources are the key component of a PPHI, therefore; choose well the team members.
Important not to overestimate health workers awareness of ear and hearing health
Seek advice from professionals with experience on PPHI implementation and development
Find reliable and supportive partners. The PPHI will need all the help it can get
Commence activities according to priorities and resources available, BUT START !!!
Essential to keep simple but relevant and clear data records, design when PPHI is still small
Estimate projected growth well in advance and plan for future required resources
Aim towards self financing of PPHI, from the start of its implementation.
Always have clear and specific aims, objectives and goals, and review them with regularity.
Conclusions:
As defined by Flores & Berruecos8: “It is important to differenciate between identification and diagnosis, it is this last one which
leads to the appropriate establishment of programmes for treatment and rehabilitation”. Therefore, to establish a successful
Programme for the Prevention of Hearing Impairment in a Developing Country, where most resources are limited, we consider it is
necessary to identify the following elements:
1. The right perception of the situation
2. The right people
3. The right strategies
4. The right activities
5. The right advice
6. The right partners
7. The right self-evaluation mechanisms
Our view is that, for a National Programme in Hearing Impairment Prevention to materialize in Bolivia, it will be necessary to join
the efforts of resident health professionals, external aid agencies and health authorities at local, regional and central government
level. The way forward to alleviate the burden of hearing disability depends upon the coordination of activities for Primary,
Secondary and Tertiary prevention of ear disease and hearing impairment throughout the life span. To fully integrate such a
programme into a National Health Service for all, in Bolivia, will probably have to be seen as a long term goal.
References:
1. Population Census 2001/Projections. Economical data 2006-2007. INE (Instituto Nacional de Estadística de Bolivia) /
WHO. In Indicadores Demográficos y Económicos. Web Page: http://www.ine.gov.bo and Government links.
2. Ser sordo en el Beni, Bolivia: Manejo del Déficit Auditivo en países deprimidos. Santana-Hernández DJ, Santana-
Hernández JL, Barboza I. ENT News Español 2004; vol 1(6): 6-11.
3. Población integrada a la educación formal. Guevara M. In Ofertas Educativas para personas con necesidades
educativas especiales en Bolivia. Guevara M, Dirección Nacional de Educación Especial, La Paz (1997): 60-3.
4. http://www.totaifoundation.com
5. http://www.cbmi.de
6. Resources. Smith AW, World Health Organisation and CBM-Christoffel Blindenmission. 2nd Regional Deafness Prevention
Workshop, Costa Rica. Noviembre 2004
7. Data recollection at Programme for Prevention of Hearing Impairment in Bolivia - Assessing the population needs and
prioritizing interventions. Santana-Hernández DJ. Abstracts Compilation: 1st International Conference on Prevention and
Rehabilitation of Hearing Impairment. Beijing, China. 26th to 28th April 2007: p62
8. Identificación y Diagnóstico tempranos de los problemas auditivos. Berruecos P. In El niño sordo de edad preescolar.
Flores L, Berruecos P, Editorial Trillas, México D F (1991): p37.
Diego J Santana-Hernández MD
Fundación Totaí, Casilla 158, Trinidad-Beni, Bolivia
Setting up a Programme for Prevention of Hearing Impairment in Bolivia
- Where to start and lessons learnt -
Dr. Diego J. Santana-Hernández
Fundación Totaí, Trinidad-Beni, Bolivia, Casilla 158
santanadjeh@hotmail.com
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