AN ASSESSMENT OF KNOWLEDGE AND ATTITUDES OF GENETIC COUNSELING SERVICES IN U.S. HTCs

Hemophilia is a hereditary bleeding disorder which requires lifelong specialized care. A network of Hemophilia Treatment Centers (HTCs) exists to meet the medical needs of patients affected by hemophilia. Genetic counseling services are an integral part of the HTC model of care; however, many HTCs do not have genetic counselors on staff. As a result, the duty to provide these services must fall to other healthcare providers within the HTC. To assess the knowledge and attitudes of these providers we developed a 49 question survey that was distributed electronically to hematologists and nurses at U.S. HTCs. The survey consisted of a three sections: demographic information, knowledge of hemophilia genetics, and attitudes towards genetic services. A total of 111 complete responses were received and analyzed. The average knowledge score among all participants was 74.8% with a total of 81 participants receiving a passing score of 70% or above. Thirty participants scored below 70% in the knowledge section. In general, attitude scores were high indicating that the majority of hematologists and nurses in HTCs feel confident in their ability to provide genetic counseling services. Over 90% of participants reported that they have some form of access to genetic counseling services at their center. Hematologists and nurses practicing in U.S. HTCs demonstrate sufficient knowledge of the genetics of hemophilia, and they generally feel confident in their ability to provide genetic counseling services to their patients. While their knowledge is sufficient, the average knowledge score was lower than 75%. Certain questions covering new genetic technologies and testing practices were more commonly missed than questions asking about more basic aspects of hemophilia genetics, such as inheritance and carrier testing. Finally, many clinics report having access to a counselor, but it is oftentimes a hematologist or nurse who is providing genetic counseling services to patients. Given the inconsistency in knowledge among providers coupled with the high confidence in one’s ability to counsel patients, it leaves room to question whether information about the genetics of hemophilia is being communicated to patients in the most appropriate and accurate manner.

Cost -effectiveness of services and treatments for ambulatory dually diagnosed CMHC clients: Implications for managed care

This paper reports a cost-effectiveness analysis of standard therapeutic interventions received by ambulatory dually diagnosed clients of a Community Mental Health Center (CMHC). For the purposes of this study dually diagnosed was defined as a DSM-III-R or IV diagnosis of a major mental disorder and a concomitant substance abuse disorder. The prevalence of dually diagnosed people among the mentally ill and their unique and problematic nature continues to challenge and encumber CMHCs and poses grave public health risks. An absence of research on these clients in community-based settings and the cost-effectiveness of their standard CMHC care has hindered the development of effective community-based intervention strategies. This exploratory and descriptive effort is a first step toward providing information on which to base programmatic management decisions.^ Data for this study were derived from electronic client records of a CMHC located in a large Southwestern, Sun-belt metropolitan area. A total of 220 records were collected on clients consecutively admitted during a two-and-one-half year period. Information was gathered profiling the clients' background characteristics, receipt of standard services and treatments, costs of the care they received, and length of CMHC enrollment and subsequent psychiatric hospitalizations. The services and treatments were compared with regard to their costs and predicted contributions toward maintaining clients in the community and out of public psychiatric hospitals.^ This study investigated: (1) the study groups' background, mental illness, and substance abuse characteristics; (2) types, extent, and patterns of their receipt of standard services and treatments; (3) associations between the receipt of services and treatments, community tenure, and risk of psychiatric hospitalization; and, (4) comparisons of average costs for services and treatments in terms of their contributions toward maintaining the clients in the community.^ The results suggest that substance abuse and other lifestyle factors were related to the dually diagnosed clients' admissions to the CMHC. The dually diagnosed clients' receipt of care was associated strongly with their insurability and global functioning. Medication Services were the most expensive yet effective service or treatment. Supported Education was the third most expensive and second most effective. Psychosocial Services, the second most expensive, were only effective in terms of maintaining clients in the community. Group Counseling, the fourth most expensive, had no effect on community maintenance and increased the risk of hospitalization when accompanied by Medication Services. Individual Counseling, the least expensive, had no effect on community maintenance. But it reduced the risk of hospitalization when accompanied by Medication Services. Networking/Referral, the fifth most expensive service or treatment, was ineffective.^ The study compared the results with findings in the literature. Implications are discussed regarding further research, study limitations, practical applications and benefits, and improvements to theoretical understandings, in particular, concepts underscoring Managed Care. ^

End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^

The XXI century guidance and its social responsibility

El presente trabajo tiene como finalidad considerar la orientación del siglo XXI en Venezuela como una disciplina con un alto compromiso social. Como programa, debe, hoy día, redefinirse con el objeto de impulsar propuestas conducentes a la inclusión de todas aquellas personas, que tradicionalmente han sido excluidas por su raza, etnia, género y/o discapacidad física y que como praxis social esté dirigida a la facilitación de los procesos de desarrollo humano en las dimensiones del Ser, Convivir, Servir, Conocer y Hacer, en el contexto personal, familiar y comunitario a lo largo del continuo del ciclo vital. L as competencias adquiridas a través de los procesos de orientación, son determinantes para proporcionar los medios a las ciudadanas y los ciudadanos para gestionar su propio desarrollo y el de su comunidad Se plantea la necesidad de un cambio de paradigma que deje atrás la clásica postura de un orientador que ayuda al orientado, desde el que conoce, el que tiene experiencia. Se sugiere más bien una relación de orientación intersubjetiva. Por otra parte, se habla de la necesidad de fortalecer el capital social de los espacios que contextualizan el proceso orientador. Se explican además, los alcances del Sistema Nacional de Orientación.

International governmental agencies and career guidance

The international Organization for Economic Cooperation and Develop-ment (OECD), like many national and international organizations concerned with economic development believes that career guidance has an important role in promoting the development of a country's human resources. (Mapping the future: Young People and career guidance OECD, 1996). Generally the economic development agencies always recommend that career guidance services should be strengthened. Too frequently, however, they do not recognize the difficulties facing counselor in the schools and do not give clear and specific recommendations, yet they appear to believe that the education or other au thorities who are responsible to guidance will quickly agree and provide more resources for guidance. In addition to economic development agencies, social and educational development agencies also make important recommendations concerning the provision of guidance services. UNESCO, for example, has published two re- cent reports (Policies and Guidelines for Educational and Vocational Guidelines for Equal Access and Opportunity for Girls and Women in Technical and Vocational Education.) It is interesting to compare the OECD and UNESCO rec- ommendations and note that the relative strengths of each set of recommenda- tions, and to imagine how they might be combined in advocating changes in policies and programs.

Guidance and counseling in Latin America : General considerations about the criteria of coherence, cooperation and quality

La Orientación en América Latina, como campo de formación profesional y en comparación con Europa y Estados Unidos, es una actividad de reciente aceptación en los medios académicos. La misma se ha caracterizado por una constante evolución en su afán de adaptarse a los nuevos cambios y transformaciones sociales, políticas y económicas que se suceden en el continente latinoamericano. En esta ponencia se presenta un panorama general acerca de la Orientación en América Latina. Las principales consideraciones formuladas se relacionan con cuatro dimensiones: a) la dimensión política pública, donde se presentan la situación actual y las propuestas al respecto; b) la dimensión contextual que hace referencia a la formación del orientador y los diferentes escenarios de acción; c) la dimensión organizacional que se relaciona con la provisión de este servicio, y d) la dimensión metodológica donde se desarrollan los principales aspectos relacionados con la práctica de la Orientación.

The computer paradigm in vocational guidance

The technological advances in last decades have transformed the external resources of Vocational Counseling, Occupational Information and assessment of clients. Most computer systems follow a behaviorist-cognitive approach. However, the use of vocational counseling software is not exclusive to one conceptual approach. Computers are introduced in education from primary school; counselors and other educators are expected to use those systems. The attitude of counselors ranges from enthusiastic acceptance to complete refusal. Many counselors fear that computers will replace them. An underlying theory holds that counseling is based on the counselor-client interaction. A computer- client interaction cannot be considered vocational counseling. Counseling has five basic aims: prevention, assistance, education and development, service of diverse groups and research. The most relevant trends in computer-based counseling are: tests and questionnaires based on computers, adaptive development, computarized information, vocational counseling systems and research. Basic aims and the potential role of computers in achieving them are discussed. Present vocational counselors can use the technology of computers to link the past of our profession to its promising future. In view of these premises we have developed two computer systems that assist the vocational counseling process: "Professional Interests Questionnaire, Computer Version", and "Computer-based System of Vocational Counseling".

The XXI century guidance and its social responsibility

El presente trabajo tiene como finalidad considerar la orientación del siglo XXI en Venezuela como una disciplina con un alto compromiso social. Como programa, debe, hoy día, redefinirse con el objeto de impulsar propuestas conducentes a la inclusión de todas aquellas personas, que tradicionalmente han sido excluidas por su raza, etnia, género y/o discapacidad física y que como praxis social esté dirigida a la facilitación de los procesos de desarrollo humano en las dimensiones del Ser, Convivir, Servir, Conocer y Hacer, en el contexto personal, familiar y comunitario a lo largo del continuo del ciclo vital. L as competencias adquiridas a través de los procesos de orientación, son determinantes para proporcionar los medios a las ciudadanas y los ciudadanos para gestionar su propio desarrollo y el de su comunidad Se plantea la necesidad de un cambio de paradigma que deje atrás la clásica postura de un orientador que ayuda al orientado, desde el que conoce, el que tiene experiencia. Se sugiere más bien una relación de orientación intersubjetiva. Por otra parte, se habla de la necesidad de fortalecer el capital social de los espacios que contextualizan el proceso orientador. Se explican además, los alcances del Sistema Nacional de Orientación.

International governmental agencies and career guidance

The international Organization for Economic Cooperation and Develop-ment (OECD), like many national and international organizations concerned with economic development believes that career guidance has an important role in promoting the development of a country's human resources. (Mapping the future: Young People and career guidance OECD, 1996). Generally the economic development agencies always recommend that career guidance services should be strengthened. Too frequently, however, they do not recognize the difficulties facing counselor in the schools and do not give clear and specific recommendations, yet they appear to believe that the education or other au thorities who are responsible to guidance will quickly agree and provide more resources for guidance. In addition to economic development agencies, social and educational development agencies also make important recommendations concerning the provision of guidance services. UNESCO, for example, has published two re- cent reports (Policies and Guidelines for Educational and Vocational Guidelines for Equal Access and Opportunity for Girls and Women in Technical and Vocational Education.) It is interesting to compare the OECD and UNESCO rec- ommendations and note that the relative strengths of each set of recommenda- tions, and to imagine how they might be combined in advocating changes in policies and programs.

Guidance and counseling in Latin America : General considerations about the criteria of coherence, cooperation and quality

La Orientación en América Latina, como campo de formación profesional y en comparación con Europa y Estados Unidos, es una actividad de reciente aceptación en los medios académicos. La misma se ha caracterizado por una constante evolución en su afán de adaptarse a los nuevos cambios y transformaciones sociales, políticas y económicas que se suceden en el continente latinoamericano. En esta ponencia se presenta un panorama general acerca de la Orientación en América Latina. Las principales consideraciones formuladas se relacionan con cuatro dimensiones: a) la dimensión política pública, donde se presentan la situación actual y las propuestas al respecto; b) la dimensión contextual que hace referencia a la formación del orientador y los diferentes escenarios de acción; c) la dimensión organizacional que se relaciona con la provisión de este servicio, y d) la dimensión metodológica donde se desarrollan los principales aspectos relacionados con la práctica de la Orientación.

The computer paradigm in vocational guidance

The technological advances in last decades have transformed the external resources of Vocational Counseling, Occupational Information and assessment of clients. Most computer systems follow a behaviorist-cognitive approach. However, the use of vocational counseling software is not exclusive to one conceptual approach. Computers are introduced in education from primary school; counselors and other educators are expected to use those systems. The attitude of counselors ranges from enthusiastic acceptance to complete refusal. Many counselors fear that computers will replace them. An underlying theory holds that counseling is based on the counselor-client interaction. A computer- client interaction cannot be considered vocational counseling. Counseling has five basic aims: prevention, assistance, education and development, service of diverse groups and research. The most relevant trends in computer-based counseling are: tests and questionnaires based on computers, adaptive development, computarized information, vocational counseling systems and research. Basic aims and the potential role of computers in achieving them are discussed. Present vocational counselors can use the technology of computers to link the past of our profession to its promising future. In view of these premises we have developed two computer systems that assist the vocational counseling process: "Professional Interests Questionnaire, Computer Version", and "Computer-based System of Vocational Counseling".

The XXI century guidance and its social responsibility

El presente trabajo tiene como finalidad considerar la orientación del siglo XXI en Venezuela como una disciplina con un alto compromiso social. Como programa, debe, hoy día, redefinirse con el objeto de impulsar propuestas conducentes a la inclusión de todas aquellas personas, que tradicionalmente han sido excluidas por su raza, etnia, género y/o discapacidad física y que como praxis social esté dirigida a la facilitación de los procesos de desarrollo humano en las dimensiones del Ser, Convivir, Servir, Conocer y Hacer, en el contexto personal, familiar y comunitario a lo largo del continuo del ciclo vital. L as competencias adquiridas a través de los procesos de orientación, son determinantes para proporcionar los medios a las ciudadanas y los ciudadanos para gestionar su propio desarrollo y el de su comunidad Se plantea la necesidad de un cambio de paradigma que deje atrás la clásica postura de un orientador que ayuda al orientado, desde el que conoce, el que tiene experiencia. Se sugiere más bien una relación de orientación intersubjetiva. Por otra parte, se habla de la necesidad de fortalecer el capital social de los espacios que contextualizan el proceso orientador. Se explican además, los alcances del Sistema Nacional de Orientación.

Guidance and counseling in Latin America : General considerations about the criteria of coherence, cooperation and quality

La Orientación en América Latina, como campo de formación profesional y en comparación con Europa y Estados Unidos, es una actividad de reciente aceptación en los medios académicos. La misma se ha caracterizado por una constante evolución en su afán de adaptarse a los nuevos cambios y transformaciones sociales, políticas y económicas que se suceden en el continente latinoamericano. En esta ponencia se presenta un panorama general acerca de la Orientación en América Latina. Las principales consideraciones formuladas se relacionan con cuatro dimensiones: a) la dimensión política pública, donde se presentan la situación actual y las propuestas al respecto; b) la dimensión contextual que hace referencia a la formación del orientador y los diferentes escenarios de acción; c) la dimensión organizacional que se relaciona con la provisión de este servicio, y d) la dimensión metodológica donde se desarrollan los principales aspectos relacionados con la práctica de la Orientación.

The computer paradigm in vocational guidance

The technological advances in last decades have transformed the external resources of Vocational Counseling, Occupational Information and assessment of clients. Most computer systems follow a behaviorist-cognitive approach. However, the use of vocational counseling software is not exclusive to one conceptual approach. Computers are introduced in education from primary school; counselors and other educators are expected to use those systems. The attitude of counselors ranges from enthusiastic acceptance to complete refusal. Many counselors fear that computers will replace them. An underlying theory holds that counseling is based on the counselor-client interaction. A computer- client interaction cannot be considered vocational counseling. Counseling has five basic aims: prevention, assistance, education and development, service of diverse groups and research. The most relevant trends in computer-based counseling are: tests and questionnaires based on computers, adaptive development, computarized information, vocational counseling systems and research. Basic aims and the potential role of computers in achieving them are discussed. Present vocational counselors can use the technology of computers to link the past of our profession to its promising future. In view of these premises we have developed two computer systems that assist the vocational counseling process: "Professional Interests Questionnaire, Computer Version", and "Computer-based System of Vocational Counseling".

International governmental agencies and career guidance

The international Organization for Economic Cooperation and Develop-ment (OECD), like many national and international organizations concerned with economic development believes that career guidance has an important role in promoting the development of a country's human resources. (Mapping the future: Young People and career guidance OECD, 1996). Generally the economic development agencies always recommend that career guidance services should be strengthened. Too frequently, however, they do not recognize the difficulties facing counselor in the schools and do not give clear and specific recommendations, yet they appear to believe that the education or other au thorities who are responsible to guidance will quickly agree and provide more resources for guidance. In addition to economic development agencies, social and educational development agencies also make important recommendations concerning the provision of guidance services. UNESCO, for example, has published two re- cent reports (Policies and Guidelines for Educational and Vocational Guidelines for Equal Access and Opportunity for Girls and Women in Technical and Vocational Education.) It is interesting to compare the OECD and UNESCO rec- ommendations and note that the relative strengths of each set of recommenda- tions, and to imagine how they might be combined in advocating changes in policies and programs.