The province of Holguin will be the national headquarters of the first clinical, functional and social evaluation of people with disabilities, to be held on November 6th, sponsored by the Ministry of Public Health with the support of the Pan American Health Organization.
Dr.Sandra Bárbara Gurris Hidalgo, Holguín, Cuba
Sandra Bárbara Gurris Hidalgo, provincial coordinator of the Programs of Attention to People with Disabilities, explained other details about this important study.
Why was Holguín chosen as the pilot territory for this study?
“The origin of this study arises in the context of the actions for the improvement of the attention to this population group, through Agreement 9040 of the Council of Ministers, which evaluates the attention received by people with disabilities in the country.
“Several criteria were used to select the province of Holguín for the piloting of this study, especially for having a prevalence of 3.8 percent of our population with a disability, an index above the national average. In addition to having specialized services that only exist in this territory. Among them the Center for Research and Rehabilitation of people with Hereditary Ataxias (Cirah) and the Provincial Center for Retinitis Pigmentosa where, in addition to studying people with this diagnosis, we have included the care consultation for people with the condition of Albinism, both of which are national references.
“We also have adequate human resources for the field work, due to the sensitivity and support shown by the authorities of the territory and results achieved in the care of people with disabilities.”
What are the characteristics of this study?
“The evaluation is scheduled to begin in early November, which will be divided into stages. It will be carried out for the first time in Cuba and, in addition to the sponsorship of the Ministry of Public Health and the Pan American Health Organization, it will count on the contribution of the Provincial Health Directorate in Holguin, the Section of Senior Citizens, Social Assistance, Disability and Mental Health, together with the Associations of People with Disabilities, the Rehabilitation Program and the Departments of Statistics and Primary Health Care.
“It has the special feature that precisely group four, which includes people with disabilities, will be studied. We will have other clinical sites where the general population will be studied”.
“It will be carried out respecting the ethical aspects required by scientific research on human subjects, included in the informed consent, to people with disabilities from the municipalities of Holguin and Gibara and a wide random sample of the population of the clinical sites of both municipalities.”
How was it organized?
“The evaluation is organized in order to define the level of functionability of the population under study, to evaluate the functioning of the services provided to the population and to design a methodology for the administrative management and organization of the services offered to persons with disabilities.
“Medical and social assistance units, school and work centers were selected. In each of the 25 institutions where the clinical sites will be located, the place will be identified as Discif Cuba Site, where the work team will be located.
“Four educational centers have been chosen as clinical sites, La Edad de Oro special school, where the hearing and visual disabilities will be studied; the Jorge Ricardo Masetti special school, where the intellectual disability will be studied; the Menelao Mora junior high school where the piloting will be carried out in three groups, one for each year; and the elementary school Paquito González Cueto in a sixth grade classroom. The Hearing Center with everything related to this disability.
“In addition to the 10 rehabilitation services in each health area, the Pedro Vázquez Hidalgo Home for the Elderly and the emblematic brewery company Bucanero S.A. were also chosen as clinical sites, where everything related to environmental noise will be studied.
“As for Gibara, a clinical site will be made in the rehabilitation services and another one in the Carlos Juan Finlay Home for the Elderly.”
Who are responsible for developing this study?
“To carry out the clinical, functional and social evaluation of people with disabilities in Cuba, the software DisCifCuba was created, which contains WHODAS 2.0 modified, adapted and with the inclusion of a module for the pediatric age from two years of age.
So each clinical site has been named DisCifCuba, where the research will be led by a trio of a defectologist, a social worker and a rehabilitation specialist, the latter being a physician, resident, technician or graduate of this service. In addition, all clinical sites will be accompanied by a representative of the Ministry of Public Health (MINSAP).
Thus, trained personnel with experience in the care of these patients have been selected according to the type of disability, since all disabilities will be studied: visual, hearing, intellectual and physical-motor”.
What is the importance of this study for people with disabilities in the province of Holguin?
“This will be the first research on a national scale that provides scientific information on the functioning and disability of the population under study, and likewise, for the first time, the degree of function it possesses will be known, using the residual capacities to achieve greater independence and functioning.
“This first edition will take up the research conducted in the 1990s in Havana, then in 2001 and 2003, on the psychosocial and clinical-genetic study of people with disabilities, which will allow, at its conclusion, to propose adequate and person-centered social services, prepare the manual of standards and procedures for the care of people with disabilities, as well as propose a training program for professionals, the family and society.
“Disability assessment is useful for health care and public policy decisions, in terms of identifying needs, adjusting treatments and interventions, measuring outcomes and effectiveness, setting priorities, allocating resources and organizing services.
“It is now necessary to update professionals on the care of people with disabilities for the subsequent nationwide implementation of this assessment. Hence, this study should become an essential space where science and the exchange with the people being evaluated will make it possible to know the degree of function that the population under study possesses.”
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