Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study

Widespread genetic testing for haemophilia has recently been introduced in Victoria, Australia. While attitudes towards predictive testing have been studied in other conditions, such as cancer, there is limited knowledge about the attitudes of members of the haemophilia community towards predictive testing. This study aimed at exploring attitudes towards, and beliefs about, genetic testing amongst members of the haemophilia community in Victoria prior to the widespread introduction of testing. The study was qualitative and descriptive. In-depth face to face interviews were held with a sample of 39 individuals, including men with haemophilia, female carriers and family members. Data were analysed thematically using cross-case analysis techniques. There was considerable knowledge about the proposed introduction of widespread genetic testing. However, not everyone thought that testing was accessible or user friendly, and there was confusion about who needed to be tested. Most thought that testing was necessary for adolescent girls to determine carrier status to help prepare families for a child with haemophilia, rather than leading them to choose to terminate a pregnancy or not to have children. A minority of women stated that if there was a history of inhibitors in a family then a termination might be considered. The study revealed strong religious beliefs among those studied, which may have influenced attitudes and approaches towards testing. Further investigation is needed into how people with a possible haemophilia genotype negotiate decisions about their further identification, and how this knowledge is placed within cultural, religious and family contexts.

Attitudes of Parents at risk of inheriting Li-Fraumeni Syndrome towards predictive genetic testing in their minor-aged children.

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers has not been shown to reduce mortality. Due to the lack of effective screening techniques for childhood cancers, institutions vary with regard to their policies on testing children for LFS. There are currently no national guidelines regarding predictive testing of children who are at risk of inheriting LFS. No studies have looked at parental attitudes towards predictive p53 genetic testing in their children. This was a cross-sectional pilot study aimed at describing these attitudes. We identified individuals whose children were at risk for inheriting p53 genetic mutations. These individuals were provided with surveys which included validated measures addressing attitudes and beliefs towards genetic testing. The questionnaire included qualitative and quantitative measures. Six individuals completed and returned the questionnaire with a response rate of 28.57%. In general, respondents agreed that parents should have the opportunity to obtain p53 genetic testing for their child. Parents vary in regard to their attitudes towards who should be involved in the decision making process and at what time and under what considerations testing should occur. Testing motivations cited most important by respondents included family history, planning for the future and health management. Concern for insurance genetic discrimination was cited as the most important “con” to genetic testing. Although limited by a poor response rate, this study can give health care practitioners insight into testing attitudes and beliefs of families considering pediatric genetic testing.

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.

Attitudes About Predictive MEN1 Genetic Testing in Minors

Multiple Endocrine Neoplasia type 1 (MEN1) is a hereditary cancer syndrome characterized by tumors of the endocrine system. Tumors most commonly develop in the parathyroid glands, pituitary gland, and the gastro-entero pancreatic tract. MEN1 is a highly penetrant condition and age of onset is variable. Most patients are diagnosed in early adulthood; however, rare cases of MEN1 present in early childhood. Expert consensus opinion is that predictive genetic testing should be offered at age 5 years, however there are no evidence-based studies that clearly establish that predictive genetic testing at this age would be beneficial since most symptoms do not present until later in life. This study was designed to explore attitudes about the most appropriate age for predictive genetic testing from individuals at risk of having a child with MEN1. Participants who had an MEN1 mutation were invited to complete a survey and were asked to invite their spouses to participate as well. The survey included several validated measures designed to assess participants’ attitudes about predictive testing in minors. Fifty-eight affected participants and twenty-two spouses/partners completed the survey. Most participants felt that MEN1 genetic testing was appropriate in healthy minors. Younger age and increased knowledge of MEN1 genetics and inheritance predicted genetic testing at a younger age. Additionally, participants who saw more positive than negative general outcomes from genetic testing were more likely to favor genetic testing at younger ages. Overall, participants felt genetic testing should be offered at a younger age than most adult onset conditions and most felt the appropriate time for testing was when a child could understand and participate in the testing process. Psychological concerns seemed to be the primary focus of participants who favored later ages for genetic testing, while medical benefits were more commonly cited for younger age. This exploratory study has implications for counseling patients whose children are at risk of developing MEN1 and illustrates issues that are important to patients and their spouses when considering testing in children.

Investigating attitudes towards three South American destinations in an emerging long haul market using a model of consumer-based brand equity (CBBE)

Despite the importance of destination image in market competitiveness, and the popularity of the field within tourism literature, there remains a dearth of published research examining travellers’ perceptions of destinations in South America. This manuscript addresses this gap by testing a model of consumer-based brand equity (CBBE) associated with three South American countries; Chile, Brazil and Argentina. The introduction of direct air links and a free trade agreement in 2008 has led destination marketing organisations (DMOs) in these countries to increase promotional efforts in the Australian market. This study shows that the CBBE model is an appropriate tool to explore consumers’ attitudes in the long haul travel context. The findings provide DMOs of the three countries studied, with benchmarks against which to compare the impact of future marketing communications in Australia. The results provide increased transparency and accountability to stakeholders, such as South American tourism businesses and Australian travel intermediaries.

Awareness and attitudes towards the emerging use of nanotechnology in the agri-food sector

Nanotechnology has relevance to applications in all areas of agri-food including agriculture, aquaculture, production, processing, packaging, safety and nutrition. Scientific literature indicates uncertainties in food safety aspects about using nanomaterials due to potential health risks. To date the agri-food industry's awareness and attitude towards nanotechnology have not been addressed. We surveyed the awareness and attitudes of agri-food organisations on the island of Ireland (IoI) with regards to nanotechnology. A total of 14 agri-food stakeholders were interviewed and 88 agri-food stakeholders responded to an on-line questionnaire. The findings indicate that the current awareness of nanotechnology applications in the agri-food sector on the IoI is low and respondents are neither positive nor negative towards agri-food applications of nanotechnology. Safer food, reduced waste and increased product shelf life were considered to be the most important benefits to the agri-food industry. Knowledge of practical examples of agri-food applications is limited however opportunities were identified in precision farming techniques, innovative packaging, functional ingredients and nutrition of foods, processing equipment, and safety testing. Perceived impediments to nanotechnology adoption were potential unknown human health and environmental impacts, consumer acceptance and media framing. The need for a risk assessment framework, research into long term health and environmental effects, and better engagement between scientists, government bodies, the agri-food industry and the public were identified as important.

Farmers' attitudes towards techniques for improving oestrus detection in dairy herds in South West England

Unidentified heats contribute to declining fertility rates in English dairy herds. Several techniques have been advocated to improve heat detection rates. Despite demonstrable technical efficacy and cost-effectiveness, uptake is low. A study in South West England used the Theory of Reasoned Action (TORA) to explore dairy farmers' attitudes and beliefs towards heat detection techniques. Few farmers were convinced that following prescribed observation times, milk progesterone testing and using pedometers would fit their system or improve on their current heat detection practices. Perceived difficulty of using a technique was not a constraint on adoption. Without promotion that addresses identified barriers and drivers to adoption, little change in current practice can be expected. (c) 2006 Elsevier B.V. All rights reserved.

Knowledge, attitudes and experience associated with testing for prostate cancer: a comparison between male doctors and men in the community

Background: Debate about testing for prostate cancer using prostate-specific antigen (PSA) and digital rectal examination (DRE) continues. The evidence of benefit from screening for prostate cancer using PSA tests is inconclusive, and it is unclear how PSA can be used most effectively in the detection of prostate cancer. Given the lack of consensus, it is important that consumers understand the issues in a way that will permit them to decide whether or not to have a test and, if symptomatic, how their condition is managed.

Aims: To compare prostate cancer knowledge, attitudes and testing experiences reported by male doctors and men in the community, despite the lack of evidence of a benefit.

Methods : The primary method for ascertaining the attitudes of male doctors (MD) was a telephone survey, with some doctors electing to complete a written survey. Each MD was selected, at random, from a register of male practitioners aged ≥ 49 years of age. A total of 266 MD participated in the survey. The community sample (CS) was accessed using a telephone survey. Five hundred male Victorian residents aged ≥ 49 years of age participated in the study.

Results:
Knowledge − Overall, 55% of the CS indicated ­correctly that prostate disease is sometimes cancer, compared to 83% of MD.

Attitudes − Fifty-five per cent of MD believed men should be tested for prostate disease at least every 2 years, compared to 68% of men in the CS.

Testing experience − Forty-five per cent of MD had been tested for prostate cancer in the past, and 92% of those tests were reported as negative. In the CS, 56% had been tested for prostate cancer in the past, and 78% of the results were reported as negative. The ­significant independent predictors of having had a prostate test among MD were: (i) age (≥ 60 years; odds ratio (OR): 1.59; 95% confidence intervals (CI): 1.30−1.88) and (ii) positive attitudes towards regular testing for prostate cancer (OR: 2.27; 95% CI: 1.98−2.56). The significant independent predictors for the CS were: (i) age (≥ 60 years; OR: 1.65; 95% CI: 1.40−1.89), (ii) being married (OR: 1.30; 95% CI: 1.00−1.60), (iii) knowledge that prostate disease was sometimes cancer (OR: 1.46; 95% CI: 1.26−1.66) and (iv) positive attitudes towards regular testing for prostate cancer (OR: 2.12; 95% CI: 1.90−2.34).

Conclusions: The results highlight that testing for prostate cancer is widespread in the community and in the medical profession. Further research should be undertaken to identify how to help men make fully informed decisions about prostate cancer testing.

Development, reliability and validity of a tool, to measure emergency department clinicians' attitudes towards family presence (FP) during acute deterioration in adult patients.

Despite many studies of family presence during resuscitation, no validated tool exploring the attitudes and beliefs of healthcare staff towards family presence has been published. The aim of this paper is to describe the development of a tool to accurately measure the attitudes and beliefs of emergency department staff towards family presence in the deteriorating adult patient, present the results of validity and reliability testing, and present the final validated tool. Twenty-nine items were developed, informed by themes from the literature and unvalidated published tools related to family presence during resuscitation. The tool was piloted on a sample of 68 emergency nursing and medical staff. Content validity and face validity were established using feedback from participants. Reliability was established by unidimensionality, exploratory factor analysis and internal consistency. Sixteen items were deleted from the original tool due to low item-to-total correlations and low communalities. Exploratory factor analysis of the remaining items revealed four factors with acceptable correlation coefficients and appropriate explanation of variance. Cronbach's alpha for each factor was >0.7 indicating a high degree of internal consistency. The four factors were labelled and arranged in a logical order to form the final tool, the Emergency Department Family Presence Survey.

Attitudes towards American brands and brand America

A study of 556 students at colleges and universities in Australia, Hong Kong and Singapore explored the relationship between attitude towards the United States and brand attitudes and preferences. Singaporean student attitudes towards both the US Government and US people were higher than were those of the Australian and Hong Kong students. Coke, Nike and McDonald's were among both the most-liked and disliked US brands among the international students, a finding suggesting that brands may possess both a 'lovemark' status, as described in the literature, and its opposite — 'loathemark' status — within the same demographic group. US brand preference scores did not offer support for the belief that international consumers 'vote with their pocketbooks' by refusing to purchase US brands if they have a negative attitude towards the United States. Among Hong Kong and Singaporean students, favourable attitudes towards the purchase of US brands was found to be positively related to favourability towards the US Government.

A study of the attitudes towards unethical selling amongst Chinese salespeople

The latter part of the twentieth century saw the Chinese economy moving towards a socialist market economy rather than a planned system. Despite growing interest in Chinese business ethics, little work has examined ethical issues concerning the Chinese sales force. This study draws from existing work on Chinese and Western business and sales ethics to develop hypotheses regarding the perceptions of unethical selling behaviour of modern Chinese salespeople. A survey of Chinese sales executives is conducted and statistically analysed. Results are compared with those reported in previous US-based research with regard to differences in perceptions of unethical selling behaviour. The results indicate that contemporary Chinese salespeople were more favourably disposed than expected towards unethical selling behaviour, and also more favourably disposed than previously studied US salespeople. Younger Chinese salespeople evaluated unethical behaviours more favourably than older ones. The results are discussed, along with implications for theory, practice and future work.

Elderly people's use of and attitudes towards assistive devices

People in developed countries are living longer with the help of medical advances. Literature has shown that older people prefer to stay independent and live at home for as long as possible. Therefore, it is important to find out how to best accommodate and assist them in maintaining quality of life and independence as well as easing human resources. Researchers have claimed that assistive devices assist in older people’s independence, however, only a small number of studies regarding the efficiency of assistive devices have been undertaken of which several have stated that devices are not being used. The overall aim of this research was to identify whether the disuse and ineffectiveness of assistive devices are related to change in abilities or related to the design of the devices. The objective was to gather information from the elderly; to identify what assistive devices are being used or not used and to gain an understanding on their attitudes towards assistive devices. Research was conducted in two phases. The initial phase of the research was conducted with the distribution of questionnaires to people over the age of fifty that asked general questions and specific questions on type of devices being used. Phase One was followed on by Phase Two, where participants from Phase One who had come in contact with assistive devices were invited to participate in a semi-structured interview. Questions were put forth to the interviewee on their use of and attitudes towards assistive devices. Findings indicated that the reasons for the disuse in assistive devices were mostly design related; bulkiness, reliability, performance of the device, difficulty of use. The other main reason for disuse was socially related; elderly people preferred to undertake activities on their own and only use a device as a precaution or when absolutely necessary. They would prefer not having to rely on the devices. Living situation and difference in gender did not affect the preference for the use of assistive devices over personal assistance. The majority strongly supported the idea of remaining independent for as long as possible. In conclusion, this study proposes that through these findings, product designers will have a better understanding of the requirements of an elderly user. This will enable the designers to produce assistive devices that are more practical, personalised, reliable, easy to use and tie in with the older people’s environments. Additional research with different variables is recommended to further justify these findings.