Spelling suggestions: "subject:"risk communmunication"" "subject:"risk commoncommunication""
51 |
The Next Disaster… Will Be Televised: An Exploratory Qualitative Media Analysis of Hurricane Preparedness in Television NewscastsBrown, Tyra L. 01 January 2017 (has links)
Major hurricane landfalls are the most dangerous natural hazard threats experienced in the U.S. Television news is a primary sources of hurricane hazard information and has the ability to influence what viewers understand about and how they respond to these events. While it is understood that media plays a central role in communicating weather, it is unknown whether or not news media content communicates the recommended hurricane hazard adjustments that are needed for preparedness and protection. Thus this study supports prior research calling for a closer examination of the role and effects of visual information in media documents. Using the 2005 Atlantic hurricane season, the present research employs qualitative media analysis to explore the framing of hurricane preparedness through television newscasts covering Hurricane Katrina from August 23-29, 2005. Key findings from this study suggest that there are five common frames through which hurricane information is presented to viewers of the national news broadcasts surveyed in this study. Preparedness information was found to be mainly represented through visual content but sparsely mentioned in reporting. The study also found that more often visuals were used to aid story development instead of provide educational or instructional messages that model the adoption of hazard adjustments and have the potential to motivate protective actions and behaviors by helping to increase self-efficacy. The present study concludes by discussing underlying aspects of conflict present within the media frames and offering recommendations for better integration of media content into risk communication campaigns for severe weather.
|
52 |
Personalised cardiovascular disease risk information as a motivator of behaviour change in individuals at high cardiovascular disease riskPrice, Hermione Clare January 2010 (has links)
Introduction: Cardiovascular disease (CVD) risk assessment is becoming increasingly common in routine clinical practice. Consequently many individuals are likely to be identified as being at increased CVD risk and risk reducing strategies implemented with a view to preventing future CVD. There are many steps along the pathway from CVD risk assessment to the prevention of CVD events. First, CVD risk needs to be accurately estimated using an appropriate CVD risk calculator. Secondly CVD risk information needs to be effectively communicated to the individual identified as being at increased risk. Thirdly, the risk information communicated needs to be capable of motivating behaviour change and finally behaviour change needs to result in a reduction in CVD risk. The evidence base for many of these steps has yet to be fully established. Aims: The overall aims of this work were first to adapt the United Kingdom Prospective Diabetes Study (UKPDS) Risk Engine to better display risk and achievable risk. Secondly to investigate lay perceptions of risk and to develop two interventions designed to reduce CVD risk. The two interventions were a personalised 10-year CVD risk estimate and a brief lifestyle advice intervention. Finally, the capacity of these interventions to increase physical activity and improve CVD risk factors in adults at increased CVD risk was tested. Methods: Three focus groups were held to investigate lay perceptions of risk and to inform the design of the UKPDS Risk Engine interface and a brief lifestyle advice intervention designed to motivate risk reducing behaviours. The two interventions were then tested in a 2x2 factorial randomised controlled trial. Results: The focus group results demonstrated that public interest and understanding of risk was high. In addition participants expressed clear views regarding how risk information and lifestyle advice should be presented. 194 participants at increased 10-year CVD risk (≥ 20%) were recruited from 4 Oxfordshire general practices. Neither a personalised 10-year CVD risk estimate nor a brief lifestyle advice intervention was capable of increasing physical activity or reducing estimated 10-year CVD risk in this group. Conclusions: Whilst public interest in CVD risk appeared to be high this study was unable to demonstrate that a 10-year personalised CVD risk estimate or a brief lifestyle advice intervention was able to increase physical activity in adults at increased CVD risk.
|
53 |
Data-Driven Safety Feedback as Part of Debrief for General Aviation PilotsNicoletta Fala (7022243) 13 August 2019 (has links)
<p>General Aviation (GA) is the foundation of most
flying activities and the training ground for civilian pilots, both
recreational and professional. However, the safety record for GA is lacking
compared to that of commercial aviation. Approximately 75% of accidents each
year involve personnel factors, that is, even if the pilot was not the cause of
the accident, they could have done something to either prevent it or improve
the outcome.<br></p>
<p> </p>
<p>In this research, I aim to improve GA safety
through safety-driven post-flight debrief that encourages pilots to consider
the risk in their flights and identify behavioral changes that could make their
flying safer. Providing pilots with a debrief tool that they can use with or
without a flight instructor requires that we know both what to communicate, and
how to communicate it. Risk communication heuristics and biases have not been
researched in the context of aviation and flight training and we therefore do
not know how pilots understand or respond to debrief.</p>
<p> </p>
<p>To achieve the goals of this work, I used a
three-step process: (1) identify events that may put the safe outcome of a
flight at risk, (2) detect those events in flight data, and (3) inform the
pilot in a way that helps them improve in their future flights. I use a
state-based representation of historical aviation accidents to define a list of
events or behaviors that need to be communicated to the pilots, in the form of
states and triggers. I use flight data to retrospectively detect these
behaviors upon completion of the flight, by mapping parameters or combinations
of parameters that can be calculated and tracked in the flight data to the
hazardous states and triggers defined. To present these events to pilots, I created
a prototype interactive debrief tool with risk information that I use in a
survey to evaluate the effectiveness of feedback in different representation
formats. Specifically, I evaluate the impact of three factors: representation
method (graphical and numerical), parameter type (safety and performance
parameters), and framing language (risk-centric and safety-centric). </p>
<p> </p>
<p>I disseminated the survey via aviation mailing
lists, type groups, flying clubs, and flight training providers, end received
268 responses. The survey analysis showed that the feedback representation does
affect its effectiveness in terms of risk perception, but not when it comes to
pilots’ motivation to change. The lessons learnt from this survey can be used
in creating additional surveys that delve further into risk communication
biases and our understanding of how pilots perceive risk and feedback.</p>
|
54 |
Comunicação de risco na perspectiva da área nuclear no Brasil / Risk communication in the perspective of the nuclear sector in BrazilMachado, Tariana Brocardo 17 October 2016 (has links)
O presente trabalho objetiva refletir sobre a comunicação da área nuclear no Brasil na perspectiva dos profissionais responsáveis por realizá-la. Dado que a comunicação do setor acontece no âmbito público e trata de temáticas associadas a risco, ela é investigada na óptica da comunicação pública e da comunicação de risco, sobre o que também reflete este trabalho, além de lidar com os elementos da cultura brasileira presentes no processo comunicacional. Nesse contexto, observou-se a presença de mitos da comunicação de risco e o alinhamento da percepção por parte das organizações com as políticas de comunicação eficaz de risco específicas da área nuclear. O método do estudo realizado é caracterizado por ser de tipo descritivo, de abordagem qualitativa, com coleta de dados primários, feita por meio de entrevista com escolha de amostra não-probabilística e com análise de conteúdo categorial. Entrevistaram-se oito profissionais sêniores das áreas técnica, de gestão e de comunicação de três organizações da área nuclear - CNEN, Eletronuclear e IPEN - entre outubro de 2015 e março de 2016, presencialmente e por telefone. Como resultados principais, foram encontrados a pluralidade de conceitos de risco para os diferentes entrevistados, bem como de públicos identificados como estratégicos para o estabelecimento ou estreitamento de relacionamento por parte das organizações e a diversidade de porta-vozes apontados como ideais responsáveis pela comunicação. Houve apontamentos tanto na direção de uma comunicação dialógica, ideal, quanto unidirecional, de transmissão de mensagens cunhadas pelas organizações para assimilação por parte do público, apesar das constantes referências a transparência e clareza. A presença do mito da comunicação de risco de que a área trata de assuntos muito complexos para o entendimento do público e do traço cultural do brasileiro de postura de espectador também foi marcante, tal qual a percepção de que a aceitação pública da energia nuclear é uma das principais barreiras para a comunicação com a sociedade, que segue com medo desta área ainda desconhecida. Com esses resultados, visa-se a contribuir com o Brasil no apoio aos agentes públicos do setor na tomada de decisão em relação ao estabelecimento de estratégias e planos de comunicação para o melhor relacionamento com os diferentes segmentos da sociedade brasileira. / This study aims to reflect on the communication held by the nuclear sector in Brazil in the perspective of the professionals responsible for it. As the industry\'s communication takes place in the public environment and deals with issues associated with risk, it is investigated from the viewpoint of public communication and risk communication, on which also reflects this work, in addition to dealing with the elements of the Brazilian culture present in the process. In this context, there was observed the presence of risk communication myths and the alignment of perception by organizations with the effective risk communication policies specifically designed for the nuclear field. The research method is characterized by being descriptive, with qualitative approach, with collection of primary data made through interviews with non-probability sampling and categorical content analysis. There were interviewed eight senior technical, management and communication professionals of three organizations in the nuclear field - CNEN, Eletronuclear and IPEN - between October 2015 and March 2016, in person and by phone. The main results found were the plurality of concepts of risk for different respondents, as well as several audiences identified as strategic for the establishment or strengthening of relationship by organizations and the diversity of spokespersons pointed out as ideally responsible for communicating. There were notes both toward a dialogic communication, ideal, and the unidirectional transmission of messages created by organizations for the public´s assimilation, despite constant references made to transparency and clarity. The presence of the risk communication myth that states the field deals with issues which are too complex for public understanding and the cultural trait which focuses on the viewer posture of Brazilians in the interviews was also striking, as is the perception that the lack of public acceptance of nuclear energy is the main barrier to communication with society, who is afraid of this still unknown field. With these results, the aim is to contribute to Brazil in supporting public sector agents in decision-making in relation to the establishment of strategies and communication plans for improving the relationship with the different segments of Brazilian society.
|
55 |
Perto do alcance das crianças - O papel dos personagens em propagandas de produtos de limpeza / Near the reach of children: The role of characters in advertisements for cleaning products.Rodrigues, Carla Daniela Rabelo 24 April 2009 (has links)
A partir do enunciado Conserve fora do alcance das crianças, delimitada ao produto, e do uso de caracteres infantis, delimitado à propaganda, resolveu-se investigar, por meio de pesquisa qualitativa, a possível desconstrução da percepção de risco de mães expostas às propagandas de produtos saneantes domissanitários (produtos de limpeza) que utilizam personagens animados. Para isso, foram entrevistadas mães com filhos entre 1 e 5 anos de idade, faixa etária em que mais ocorrem acidentes domésticos, com o objetivo de conhecer seu cotidiano relacionado aos produtos de limpeza e suas percepções acerca de três filmes publicitários de desinfetantes com diferentes níveis de utilização de animação infantil. Exploram-se de forma interdisciplinar os aportes teóricos da comunicação, da publicidade e da psicologia social. Além disso, considerações acerca de risco, de saúde pública e de regulação foram empreendidas. Por tratar-se de um tema pouco estudado na área de Ciências da Comunicação, constatou-se que a comunicação de risco merece estudos para tornar as informações e advertências mais eficazes. Por meio da regulação discutida e definida pelos órgãos competentes, a publicidade, somada às diversas instâncias que compõem a esfera social, pode ser utilizada para influenciar os indivíduos, advertindo sobre o uso dos produtos anunciados, de forma a contribuir com a sociedade e seus órgãos na prevenção de acidentes. / From the statement Keep out of reach of children, limited to the product, and use of children\'s characters, limited to publicity, we decided to investigate, through qualitative research, the possible deconstruction of the perceived risk to mothers exposed to advertisements of cleaning products that use animated characters. For this, we interviewed mothers with children between 1 and 5 years old, age when most home accidents occur, with the objective to know related to your everyday cleaning products and their perceptions about three disinfectants advertising films with different levels in use of animation. It explores the contributions to interdisciplinary theoretical form of communication, advertising and social psychology. Furthermore, considerations about risk, public health and regulation were undertaken. As this is a little studied subject in the Communication Sciences field, we found that risk communication studies deserves to make more effective information and warnings. Through regulation discussed and defined by the competent bodies, advertising, plus the various bodies that comprise the social sphere can be used to influence individuals, warning about use of advertised products in order to contribute to society and its organs in preventing accidents.
|
56 |
A comunicação dos riscos na preparação para emergências nucleares: um estudo de caso em Angra dos Reis, Rio de Janeiro / Risk communication in preparation for nuclear emergencies: a case study in Angra dos Reis, Rio de JaneiroCunha, Raquel Dalledone Siqueira da 22 May 2017 (has links)
O gerenciamento de riscos em uma instalação nuclear é necessário para a segurança de trabalhadores e de populações vizinhas. Parte desse processo é a comunicação dos riscos que propicia o diálogo entre gestores da empresa e moradores das áreas de risco. A população que conhece os riscos a que está exposta, como esses riscos são gerenciados e o que deve ser feito em uma situação de emergência tende a se sentir mais segura e a confiar nas instituições responsáveis pelo plano de emergência. Sem diálogo entre empresa e público, o conhecimento dos procedimentos a serem seguidos em caso de acidente não chega à população, ou quando chega, não há confiança dessas pessoas na sua eficácia. Em Angra dos Reis, no litoral sul do Estado do Rio de Janeiro, está a Central Nuclear Almirante Álvaro Alberto. No entorno dessa Central Nuclear existe uma população que, de acordo com o Plano de Emergência Externo (PEE/RJ), deverá ser evacuada ou ficar abrigada, caso ocorra um acidente na instalação. Um trabalho de comunicação de riscos entre esses moradores é necessário para que eles conheçam o plano de emergência e os procedimentos corretos para uma situação de emergência, além de buscar esclarecer dúvidas e mitos. Esse trabalho apresenta uma análise da comunicação dos riscos feita para a população local, a percepção que ela tem dos riscos e o grau de conhecimento do plano de emergência externo por parte dessas pessoas. / Risk management in a nuclear facility is necessary for the safety of workers and the surrounding population. One part of this process is risk communication that enables dialogue between the company managers and people who live within risk area. People who are aware of the risks to which they are exposed, how these risks are handled and how to behave in an emergency situation tend to feel safer and to trust the institutions responsible for the emergency plan. Without dialogue, the population has no access to the procedures necessary in occurrence of an accident, and even if they do have access, there is no trust in the institution. In Angra dos Reis, on the southern coast of the state of Rio de Janeiro, there is the Almirante Álvaro Alberto Nuclear Power Plant. In the surroundings of the power plant there is a population that, according to the External Emergency Plan, must be evacuated or sheltered in the occurrence of an accident. Communication with this population is crucial, so that they become aware of the emergency plan and to its procedures, in addition to clarify doubts and myths about the risks they are exposed. This work presents an analysis of risk communication regarding local population surrounding the nuclear power plant in Angra dos Reis, their risk perception and the degree of knowledge of the external emergency plan by this population.
|
57 |
O uso de tecnologias de comunicação de riscos para prevenir desastres / The use of risk communication technologies to prevent disastersMartins, Mário Henrique da Mata 21 November 2013 (has links)
Made available in DSpace on 2016-04-29T13:31:07Z (GMT). No. of bitstreams: 1
Mario Henrique da Mata Martins.pdf: 1133153 bytes, checksum: 8d2280e5199c9459ae2c11551c92eff6 (MD5)
Previous issue date: 2013-11-21 / Conselho Nacional de Desenvolvimento Científico e Tecnológico / The aim of this dissertation is to investigate the use of risk communication technologies for the prevention of disasters. It is justified by the recent proposals of national and international organizations for the establishment of a global culture for the prevention of such events. Among these actions, the use of risk communication technologies is considered critical for the circulation of information and the engagement of actors in preventive actions. The theoretical-methodological approach adopted in this research seeks to find partial connections between constructionist movement assumptions and Science, Technology and Society studies in this cases concerning risk communication. These case studies derived from the analysis of documents, interviews and research diaries and are presented in the format of micronarratives. The first case study discusses the version of technicians and specialists regarding the use of alert drafts as a strategy for preparation for possible disasters. When all pieces of information appears simultaneously, alert drafts decrease the time of issue. The second case study stems, from the perspective of the managers, and addresses the performative character of rain gauges on a network for monitoring and alerting risk in São Paulo. These instruments exert agency, transform the spaces in which they operate and the way different actors read the data produced by it. The last study is an alternative to previous risk communication technologies used for prevention. Its focus is the voluntary participation of radio amateurs in disaster risks communication networks and how they can associate information flow with the flexible character of their technologies. Radio amateurs, therefore, can be considered as preventive agents who deal with the imponderability of disaster and also adapt their own technologies to adverse situations. Our argument that radio amateurs can act in disaster situations prior to their occurrence is based in a reformulation of the notions of disaster time and risk prevention. Prevention will always be prone to failure. And time is just one more fluid / Esta dissertação tem por objetivo investigar o uso de tecnologias de comunicação de riscos para prevenir desastres. Justifica-se em virtude das propostas de organizações nacionais e internacionais em prol da criação de uma cultura global de prevenção desses eventos. Dentre essas propostas, o uso de tecnologias de comunicação de riscos é considerado fundamental para promover a circulação de informações e o engajamento de atores em ações de caráter preventivo. O referencial teórico-metodológico adotado busca conexões parciais entre os pressupostos do movimento construcionista e dos estudos sobre Ciência, Tecnologia e Sociedade em três estudos de caso sobre a temática. Os estudos de caso foram organizados a partir de análises de documentos, entrevistas e diários de campo e apresentados no formato de micronarrativas. O primeiro estudo de caso aborda a versão de técnicos e especialistas com relação ao uso de rascunhos de alerta como estratégia de preparação para eventuais desastres. Quando todas as informações aparecem simultaneamente, os rascunhos de alerta diminuem o tempo de emissão do alerta formal. O segundo estudo de caso aborda o caráter performático de pluviômetros em uma rede de monitoramento e alerta do município de São Paulo na perspectiva de um dos gestores. Esses instrumentos exercem agência e produzem transformações nos espaços em que operam e nas leituras feitas por diferentes atores. O último estudo é uma alternativa às tecnologias de comunicação de riscos de prevenção anteriores. Aborda a participação voluntária dos radioamadores na rede de comunicação de riscos de desastres e como podem associar informações fluidas com o caráter flexível de suas tecnologias. Os radioamadores podem, portanto, atuar como agentes de prevenção que lidam com a imponderabilidade da catástrofe ao tornar flexíveis suas tecnologias. O argumento de que radioamadores podem atuar em situações anteriores à ocorrência de desastres pauta-se em uma reformulação das noções de tempo da catástrofe e de prevenção de riscos. A prevenção sempre estará sujeita a falhas. E o tempo é mais um fluido
|
58 |
Comunicação nos processos de gestão de risco corporativo na BM&FBOVESPA / Communication in corporate risk management process in BM&FBOVESPAMoraes, Flavio de 24 October 2012 (has links)
Este trabalho aborda como é estruturada a comunicação nos processos de gestão de risco corporativo para identificar como é realizado o alinhamento das informações e percepções sobre riscos entre a gestão, conselho de administração e demais públicos interessados. Foi realizada revisão da literatura sobre Governança Corporativa, Gestão de Riscos, Gestão de Riscos Corporativos e Comunicação sobre riscos. Devido à escassez de estudos relacionados ao tema esta pesquisa possui caráter exploratório e foi utilizado o método de estudo de caso. Devido às limitações do método utilizado, as principais contribuições da pesquisa são evidências que apontam para o papel da gestão de risco corporativo como complementar à gestão de risco em silos, para a parceria entre especialistas e não especialistas em gestão de risco como fator que influencia na qualidade dos processos e da comunicação sobre riscos, bem como possíveis fatores que influenciam na formação e manutenção desta relação de parceria, além de evidências da presença de pessoas com experiência em gestão de riscos e nas atividades da empresa como possível fator que afetar a relação entre especialistas e não especialistas em gestão de riscos e a qualidade dos processos de gestão de risco. / This paper discusses how communication in enterprise risk management is structured to identify how managers, board member and other stakeholders align information and perceptions about risks. The literature review covers Corporate Governance, Risk Management, Enterprise Risk Management and Communication about risks. Due to the limitations of the method used in this research the main contributions are evidences pointing to the role of corporate risk management as complementary to the risk management silo approach, the partnership between specialists and non specialists in risk management as a factor that influences quality of processes and communication about risks and factors that might influence the formation and maintenance of this partnership relationship as well evidences of the presence of people with experience in risk management and the company\'s activities as a possible factor affecting the relationship between experts and nonexperts in risk management and the quality of risk management processes.
|
59 |
Understanding risk perceptions and responses of the public, healthcare professionals and the media : the case of Clostridium difficileBurnett, Emma Jane January 2015 (has links)
My original contribution to knowledge is the emergence of an inductively derived conceptual framework that provides a generic account of the way in which people construct and communicate risk. Within this framework, a detailed contextual understanding of how this was applied to C.difficile is developed. Furthermore, in seeking to place responses to health risks in the wider social, cultural and political context, moving beyond a standard critique of media output, an understanding of both how and why the media report health-related risks helped identify ways in which the media can influence how people can construct and communicate about risks. The incidence and severity of C.difficile infection is increasing and it is one of the most common healthcare associated infections, posing a global threat to public health. With the occurrence of major outbreaks within the UK and elsewhere, fear, confusion and unsafe infection prevention and control practices continue to exist among the public and healthcare professionals. Consequently, C.difficile is of particular interest to the media, being the focus of much media reporting. How the public perceive and respond to a health-related risk is shaped by a range of socially and contextually structured evaluations and interpretations, based on a range of factors such as availability heuristics, direct and indirect experiences and social influences, particularly those emanating from the media. Expert risk perceptions and responses on the other hand, are sometimes supposed to be more veridical than those of the public because they are based on calculations of scientific probabilities. Risk perceptions and responses however are context dependent and therefore to be understood, need to be considered within the context that they are perceived and experienced. There is currently little risk perception empirical research to draw upon within the context of C.difficile. The aim of this study was to explore risk perceptions and responses of the public and healthcare professionals within the context of C.difficile and to examine the role of the media in health-related risk reporting. This qualitative study adopted three approaches to data collection: a media coverage analysis of a major C.difficile outbreak, focus groups with the public and healthcare professionals in two geographical areas (an outbreak versus a non-outbreak area), and in-depth, semi-structured interviews with media professionals. The media coverage analysis found that the media portrayed key individuals involved in the outbreak as victims, villains and heroes. These ‘characters’ evolved as the outbreak progressed and new information became available. Such representations were frequently used as a backdrop for the public and healthcare professionals in order to support or refute their perceptions about C.difficile. For the public and healthcare professionals, the consequence of C.difficile and why it occurred was much more salient than estimations of the probability or likelihood of it occurring. Conceptual factors that were found to be important in influencing perceptions included: feelings of vulnerability; attribution of responsibility; judgements about competence; and evaluations of risk communicators. Media professionals were seen as important risk communicators in the focus groups, however they saw themselves as predominantly story tellers and entertainers, rather than ‘educators’. They also believed themselves to be advocates for the public whereby they uncover information that officialdom would seek to keep hidden. What emerged from this study was a coherent, structured and generic account of how various stakeholders construct and communicate about risk. Within this conceptual structuring, a detailed contextual understanding of how this was applied by the public and healthcare professionals around C.difficile was gained. Findings indicate that uncertainty, fear and confusion about C.difficile exist that appear to be influenced by a range of contextual factors such as indirect and direct experiences, social interaction and the media. If risk management and communication strategies are to influence the desired and effective responses towards C.difficile and wider health-related risks, those responsible for managing and communicating risk must consider already established risk perceptions in addition to the factors that have influenced such risk perceptions.
|
60 |
Family communication of genetic risk for sudden cardiac deathShah, Lisa Lynn 01 May 2017 (has links)
Background: Hypertrophic Cardiomyopathy (HCM) and Long QT Syndrome (LQTS) are genetic cardiovascular diseases that cause sudden cardiac death. When an individual is diagnosed with an inherited disease such as HCM/LQTS it is critical that their biological relatives are notified of their increased risk. Newly diagnosed individuals in turn notify other at-risk family members through a successive process called cascade screening. This facilitates screening of at-risk biological relatives through genetic testing and/or clinical testing, and treatment for HCM/LQTS prior to development of life-threatening complications. However, for cascade screening to detect all potential cases the disease risk must be effectively communicated to all at-risk relatives. The responsibility for notifying family members of this risk largely falls to the first person diagnosed in the family (proband). Empiric evidence suggests that around half of at-risk relatives are not screened in accordance with cascade screening recommendations, potentially due to information about HCM/LQTS risk not being communicated effectively in their families. Factors have been identified that influence communication about genetic risk in families with non-cardiac disease; however, it is not known if or how these factors apply in families with genetic cardiac disease. These include network factors, which describe characteristics of relationships between family members and non-network factors, which describe characteristics of individuals including individual factors, disease factors, and sociocultural factors. There is a critical need to understand communication in families with HCM/LQTS in order to facilitate effective genetic risk communication in families, improve adherence to cascade screening recommendations, and prevent death and complications from cardiovascular diseases.
Objectives: The purpose of this study was to improve our understanding of the relationships among network and non-network factors and communication of genetic risk for HCM/LQTS between probands and their relatives. I proposed the following aims:
Aim 1: Describe family social network structures and communication paths about risk for HCM/LQTS from probands to their relatives.
Aim 2: Identify which network and non-network factors are associated with who is told about risk for HCM/LQTS.
Methods: The sample for this study included individuals with HCM or LQTS recruited through the University of Iowa Cardiology Clinics (UI) and the University of Wisconsin Inherited Arrhythmia Clinic (UW). Data were collected using a structured interview, family pedigree, and survey. Analysis included egocentric social network analysis, descriptive, bivariate, and multilevel logit regression modeling.
Results: Participants in this study had an average of 24 living at-risk relatives in their families. Overall, just over half (52%) of these at-risk relatives had been reported to have been told about their risk. However, within families, the percentage of relatives told about their risk ranged from 0%-100%. Ninety percent of first-degree relatives were told about their risk, 61% of second-degree relatives were told and 33% of third-degree relatives were told. Recruitment site affiliation was determined to be a confounder and so analyses were calculated separately for UI and UW. In both the UI and UW samples, network factors including closer geographic distance, increased emotional closeness, increased relationship quality, increased frequency of communication, higher betweenness centrality, and closer degree of biological relation were independently associated with increased odds of communication of risk.
In the UI sample, non-network factors that were independently associated with increased odds of communication of risk included younger age at diagnosis; having LQTS; having positive genetic test results; having an ICD; younger current age; being female; having increased role limitations due to physical functioning; feeling anxious about telling family members about risk; feeling communication was a burden; feeling that communication was a responsibility or duty; being happy to be able to share important information; and identifying financial issues, pregnancies, or upcoming marriages as playing a role in communication. In a multivariate model, increased frequency of communication, closer degree of biological relation, having an ICD, and identifying financial issues and pregnancies as contributors to communication were significantly associated with communication of genetic risk information.
In the UW sample, non-network factors that were independently associated with increased odds of communication of risk included younger age, decreased emotional wellbeing, increased role limitations due to emotional wellbeing, and decreased energy and fatigue. In a multivariate model, increased frequency of communication and closer degree of biological relation were significantly associated with communication.
Although over half of at-risk relatives were told about their risk, just over half of those (53.8%) were reported to have screened for disease, which represents 27% of all at-risk relatives. Of those tested, 35% were reported as diagnosed with HCM/LQTS.
Conclusion: Communication of genetic risk for HCM/LQTS in families is inadequate and contributes to the problem of relatives not being screened for disease. Insight on the factors that influence communication in families at risk of sudden cardiac death can guide development of interventions, policies, and future research aimed at improving genetic risk communication and cascade screening, and preventing death and complications from inherited cardiac diseases. This research is applicable for genetic conditions where population based screening methods are not effective and rely on families to communicate risk and need for screening.
|
Page generated in 0.1661 seconds