Knowledge and Expectations of Support People in Prenatal Genetic Counseling Sessions

Prenatal genetic counseling patients have the ability to choose from a myriad of screening and diagnostic testing options, each with intricacies and caveats regarding accuracy and timing. Decisions regarding such testing can be difficult and are often made on the same day that testing is performed. Therefore, it is reasonable to consider that the support people brought to an appointment may have a role in the decision-making process. We aimed to better define this potential role by examining the incoming knowledge and expectations of support people who attended prenatal genetic counseling appointments. Support people were asked to complete a survey at one of seven Houston area prenatal clinics. The survey included questions regarding demographics, relationship to patient, incoming knowledge of the appointment, expectations of decision-making and perceived levels of influence over the decisions that would be made during the counseling session. The majority (79.4%) of the 252 participants were spouses/partners. Overall, there was poor knowledge of the referral indications with only 33.5% of participants correctly identifying the patient’s indication. Participants had even poorer knowledge of testing options that would be offered during the session, as only 17.7% were able to correctly identify testing options that would be discussed during the genetic counseling session. Of participants, just 3.6% said that they did not want to be included in discussions about screening/testing options. Only a few participants thought that they had less influence over decisions related to the pregnancy than over non-pregnancy decisions. Participants who reported feeling like they had a higher level of influence were likely to attend more of the pregnancy-related appointments with the patient. Findings from this study have provided insight into the perspective of support persons and have identified gaps in knowledge that may exist between the patients and the people they choose to bring with them into the genetic counseling session. In addition, this study is a starting point to assess how much the support people think that they impact the decision-making process of prenatal genetic counseling patients versus how much the prenatal patients value the input of the support people.

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.

Theoretical frames for the new tasks in career guidance and counseling

Personal and career development interventions aim to help people find answers to personal and career development issues that stem from the societal context in which they live. Societal definitions of these career issues have a double consequence. On the one hand, these issues differ from one culture to another; and, on the other, they evolve along with the contexts in which they are expressed. Implementation of rigorous career development interventions requires, first, a scientific reconstruction of these societal issues and, second, a clear definition of these interventions' goals and ends. Our current view of the societal issues relating to personal and career development interventions may be phrased thus--"How can we help individuals direct their lives, in the (human) society where they interact?" It may be turned into the following scientific question: "What are the factors and processes of life-long self-construction?" An articulation of three major propositions (sociological, cognitive and dynamic) seems to be needed to answer this question. Such a theoretical frame does not allow for a definition of personal and career development interventions ends. In the world of today, the adoption by everyone of a personal ethic of responsibility towards all life on Earth (H. Jonas) could well be a fundamental end to these interventions.

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.

Cross-cultural counseling: problems and prospects

This work tries to assess the contributions made to educational counseling in recent years by theoretical and applied research and practical actions in the area of cross-cultural counseling. So, it offers a synthesis of the main contributions made from the theoretical and practical viewpoints within this specific scientific field.

Theoretical frames for the new tasks in career guidance and counseling

Personal and career development interventions aim to help people find answers to personal and career development issues that stem from the societal context in which they live. Societal definitions of these career issues have a double consequence. On the one hand, these issues differ from one culture to another; and, on the other, they evolve along with the contexts in which they are expressed. Implementation of rigorous career development interventions requires, first, a scientific reconstruction of these societal issues and, second, a clear definition of these interventions' goals and ends. Our current view of the societal issues relating to personal and career development interventions may be phrased thus--"How can we help individuals direct their lives, in the (human) society where they interact?" It may be turned into the following scientific question: "What are the factors and processes of life-long self-construction?" An articulation of three major propositions (sociological, cognitive and dynamic) seems to be needed to answer this question. Such a theoretical frame does not allow for a definition of personal and career development interventions ends. In the world of today, the adoption by everyone of a personal ethic of responsibility towards all life on Earth (H. Jonas) could well be a fundamental end to these interventions.

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.

Cross-cultural counseling: problems and prospects

This work tries to assess the contributions made to educational counseling in recent years by theoretical and applied research and practical actions in the area of cross-cultural counseling. So, it offers a synthesis of the main contributions made from the theoretical and practical viewpoints within this specific scientific field.

Theoretical frames for the new tasks in career guidance and counseling

Personal and career development interventions aim to help people find answers to personal and career development issues that stem from the societal context in which they live. Societal definitions of these career issues have a double consequence. On the one hand, these issues differ from one culture to another; and, on the other, they evolve along with the contexts in which they are expressed. Implementation of rigorous career development interventions requires, first, a scientific reconstruction of these societal issues and, second, a clear definition of these interventions' goals and ends. Our current view of the societal issues relating to personal and career development interventions may be phrased thus--"How can we help individuals direct their lives, in the (human) society where they interact?" It may be turned into the following scientific question: "What are the factors and processes of life-long self-construction?" An articulation of three major propositions (sociological, cognitive and dynamic) seems to be needed to answer this question. Such a theoretical frame does not allow for a definition of personal and career development interventions ends. In the world of today, the adoption by everyone of a personal ethic of responsibility towards all life on Earth (H. Jonas) could well be a fundamental end to these interventions.

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.

Cross-cultural counseling: problems and prospects

This work tries to assess the contributions made to educational counseling in recent years by theoretical and applied research and practical actions in the area of cross-cultural counseling. So, it offers a synthesis of the main contributions made from the theoretical and practical viewpoints within this specific scientific field.

Impacts of an HIV counseling and testing initiative -- results from an experimental intervention in a large firm in South Africa

We have run experimental interventions to promote HIV tests in a large firm in South Africa. We combined HIV tests with existing medical check programs to increase the uptake. In the foregoing survey we undertook previously, it was suggested that fears and stigma of HIV/AIDS were the primary reasons given by the employees for not taking the test. To counter these, we implemented randomized interventions. We find substantial heterogeneity in responses by ethnicity. Africans and Colored rejected the tests most often. Supportive information increased the uptake by 6 to 16% points. A tradeoff in targeting resulting in stigmatizing the targeted and a reduction of exclusion error is discussed.