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MaryAnne Aitken

Publications and source records attributed to MaryAnne Aitken.

5 recordsLinked to original sources

It's "back to school" for genetic screening.

Implementation of population genetic screening programmes requires consideration of strategies for reaching the greatest proportion of the target population in order to achieve maximum awareness. This article reviews the current strategy of school-based population genetic screening programmes. The school environment is an ideal setting for offering relevant genetic screening programmes as it provides an opportunity to engage people at a time when they are exposed to a range of educational experiences and are sufficiently mature to be involved in decision-making processes. Such programmes allow all students, not only those studying biology, an opportunity to be educated and experience genetic screening in a supportive environment, ultimately increasing understanding and empowering students. While the major form of genetic screening in schools has been for reproductive health information (eg carrier screening for TaySachs disease and cystic fibrosis), genetic screening in schools for other conditions may be a timely proposition.

Australia↗

Educating general practitioners about prenatal testing: approaches and challenges.

OBJECTIVES: To examine the effects of an education intervention on the knowledge and practice behaviours of general practitioners (GPs) regarding prenatal screening and diagnostic testing in Melbourne, Australia. METHODS: A single group, pre-test, repeated post-test design was used. Information on demographics, knowledge, behaviours and skills was collected via a self-administered questionnaire prior to the educational intervention. Responses to individual questions were coded and scores calculated, as well as a percent total score. Following the education, data were again collected, immediately afterwards (Post-Q) and six-to-eight months later (Foll-Q). RESULTS: Data for all three time points were collected from 63 GPs and showed a variable, and relatively poor knowledge regarding aspects of prenatal testing, especially before education. The percent mean total score at baseline was 51.2+/-1.59% (CI 48.02 to 54.39), which increased significantly (p<0.001) in both Post-Q (62.88+/-1.51%; CI 59.86 to 65.89) and Foll-Q (58.92+/-1.6%; CI 55.71 to 62.12). CONCLUSION: The educational intervention significantly increased knowledge and practice behaviour of GPs, even up to eight months later, but this could be improved further, to a considerable extent. There is a need for ongoing multi-faceted approaches to educating GPs on prenatal testing to ensure that they are engaged in appropriate practice.

Adult↗

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature.

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Achondroplasia↗

Multimedia messages in genetics: design, development, and evaluation of a computer-based instructional resource for secondary school students in a Tay Sachs disease carrier screening program.

PURPOSE: Tay Sachs disease is a recessively inherited neurodegenerative disorder, for which carrier screening programs exist worldwide. Education for those offered a screening test is essential in facilitating informed decision-making. In Melbourne, Australia, we have designed, developed, and evaluated a computer-based instructional resource for use in the Tay Sachs disease carrier screening program for secondary school students attending Jewish schools. The resource entitled "Genetics in the Community: Tay Sachs disease" was designed on a platform of educational learning theory. METHODS: The development of the resource included formative evaluation using qualitative data analysis supported by descriptive quantitative data. The final resource was evaluated within the screening program and compared with the standard oral presentation using a questionnaire. Knowledge outcomes were measured both before and after either of the educational formats. RESULTS: Data from the formative evaluation were used to refine the content and functionality of the final resource. The questionnaire evaluation of 302 students over two years showed the multimedia resource to be equally effective as an oral educational presentation in facilitating participants' knowledge construction. CONCLUSION: The resource offers a large number of potential benefits, which are not limited to the Tay Sachs disease carrier screening program setting, such as delivery of a consistent educational message, short delivery time, and minimum financial and resource commitment. This article outlines the value of considering educational theory and describes the process of multimedia development providing a framework that may be of value when designing genetics multimedia resources in general.

Adolescent↗