A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death (YSCD) : the role of community and peer support

Background Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members’ psychosocial support needs are often unmet. Purpose This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs. Methods The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members ( N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis. Results Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning. Conclusions YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways

Public engagement with research: Citizens' views on motivations, barriers and support

Responsible research and innovation (RRI) approaches that have emerged in the past ten years point to the importance of engaging the public in dialogues about research. The different variants of RRI share the notion that societal actors, including citizens, need to work together - that is, engage in two-way communication during the research and innovation process - in order to better align both the process and its outcomes with the values, needs and expectations of society. Yet, sponsors and organizers of dialogues about research often face difficulties in recruiting sufficient numbers of participants or ensuring a sufficient level of diversity of participants. This paper asks what motivates or hinders individual citizens as members of the broader public to participate in such dialogues. It presents empirical findings of the European Union-funded project Promoting Societal Engagement Under the Terms of RRI (PROSO), which aimed to foster public engagement with research for RRI. PROSO used a quasi-experimental, qualitative approach directly involving citizens to address this question. The core of the innovative methodology were focus group discussions with European citizens about hypothetical opportunities to take part in dialogues about research. Three hypothetical scenarios of different dialogue formats (varied by whether they seek to inform the participants, consult or enable deeper collaboration on a scientific issue) were used as stimuli to explore the participants’ willingness (motivations and perceived barriers) to engage with scientific research. Our findings show a preference towards dialogue formats that give citizens a more active role and a greater say in research policy or research funding. They further suggest that those who seek to broaden citizen participation in dialogues about research should consider the role of relevance, impact, trust, legitimacy, knowledge, and time and resources as factors that can motivate or discourage citizens to take part. Based on our findings, we discuss possibilities to promote citizen participation in dialogues about research as part of putting RRI into practice

Public responses to precautionary information from the department of health (UK) about possible health risks from mobile phones

Understanding public perceptions of health information is of increasing importance in the light of the growing imperatives upon regulators to communicate information about risk and uncertainty. Communicating the possible health risks from mobile telecommunications is a domain that allows consideration of both public perceptions of uncertain public health information and public responses to precautionary advice. This research reports the results of a nationally representative survey in the UK (n = 1742) that explored public responses to a leaflet issued by the Department of Health (DoH) in 2000 providing information about the possible health risks of mobile phones. The aims of the study were twofold: a) to assess awareness of the leaflet and the extent to which participants could identify the precautionary advice that the leaflet contained as coming from the Government; and b) to examine publics’ responses to the current Government precautionary advice about mobile phone health risks; was this associated with increased concern or reassurance? The results indicate the importance of policy makers developing a clear understanding of the possible effects of communicating precautionary advice.Mobile Telecommunications and Health Research Programm

Changing micronutrient intake through (voluntary) behaviour change. The case of folate.

The objective of this study was to relate behaviour change mechanisms to nutritionally relevant behaviour and demonstrate how the different mechanisms can affect attempts to change these behaviours. Folate was used as an example to illuminate the possibilities and challenges in inducing behaviour change. The behaviours affecting folate intake were recognised and categorised. Behaviour change mechanisms from "rational model of man", behavioural economics, health psychology and social psychology were identified and aligned against folate-related behaviours. The folate example demonstrated the complexity of mechanisms influencing possible behavioural changes, even though this only targets the intake of a single micronutrient. When considering possible options to promote folate intake, the feasibility of producing the desired outcome should be related to the mechanisms of required changes in behaviour and the possible alternatives that require no or only minor changes in behaviour. Dissecting the theories provides new approaches to food-related behaviour that will aid the development of batteries of policy options when targeting nutritional problems

Precautionary advice about mobile phones: Public understandings and intended responses

The official published version can be obtained from the link below - Copyright @ Taylor & FrancisThere is a widespread academic and policy debate about public responses to precaution in public health campaigns. This paper explores these issues in relation to the precautionary stance adopted in the UK around the regulation of mobile telecommunications. The aim of the paper is to examine the nature of attitudes to precaution, and the way in which these, along with other relevant variables, relate to the intention to adopt relevant behaviours. The results from an experimental study (n = 173) indicate that people distinguish between two dimensions of precaution: firstly in relation to its value or necessity per se and secondly as anchored to notions of governance. The two variables differentially relate to other variables including trust and uncertainty, and are predictive of intended behaviour change indirectly, through worry about mobile phone risks. Precautionary advice was generally interpreted as causing concern rather than providing reassurance. The results suggest that precaution may be considered a valuable stance but this does not mean that it is seen as good governance or that it will reduce concern. Whilst the discourse of precaution is aimed at reducing concern, it appears that the uptake of relevant behaviours is largely triggered by worry

A review of consumer awareness, understanding and use of food-based dietary guidelines

Copyright @ 2011 Cambridge University PressFood-based dietary guidelines (FBDG) have primarily been designed for the consumer to encourage healthy, habitual food choices, decrease chronic disease risk and improve public health. However, minimal research has been conducted to evaluate whether FBDG are utilised by the public. The present review used a framework of three concepts, awareness, understanding and use, to summarise consumer evidence related to national FBDG and food guides. Searches of nine electronic databases, reference lists and Internet grey literature elicited 939 articles. Predetermined exclusion criteria selected twenty-eight studies for review. These consisted of qualitative, quantitative and mixed study designs, non-clinical participants, related to official FBDG for the general public, and involved measures of consumer awareness, understanding or use of FBDG. The three concepts of awareness, understanding and use were often discussed interchangeably. Nevertheless, a greater amount of evidence for consumer awareness and understanding was reported than consumer use of FBDG. The twenty-eight studies varied in terms of aim, design and method. Study quality also varied with raw qualitative data, and quantitative method details were often omitted. Thus, the reliability and validity of these review findings may be limited. Further research is required to evaluate the efficacy of FBDG as a public health promotion tool. If the purpose of FBDG is to evoke consumer behaviour change, then the framework of consumer awareness, understanding and use of FBDG may be useful to categorise consumer behaviour studies and complement the dietary survey and health outcome data in the process of FBDG evaluation and revision.This study is funded by the European Commission Sixth Framework Programme (contract no. 036196)

Understanding Public Attitudes and Willingness to Share Commercial Data for Health Research: Survey Study in the United Kingdom

Background: Health research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce. Objective: This survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors. Methods: We conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs. Results: Overall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data—51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations. Conclusions: This UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention

Consumer involvement in dietary guideline development: opinions from European stakeholders.

OBJECTIVE: The involvement of consumers in the development of dietary guidelines has been promoted by national and international bodies. Yet, few best practice guidelines have been established to assist with such involvement. DESIGN: Qualitative semi-structured interviews explored stakeholders' beliefs about consumer involvement in dietary guideline development. SETTING: Interviews were conducted in six European countries: the Czech Republic, Germany, Norway, Serbia, Spain and the UK. SUBJECTS: Seventy-seven stakeholders were interviewed. Stakeholders were grouped as government, scientific advisory body, professional and academic, industry or non-government organisations. Response rate ranged from 45 % to 95 %. RESULTS: Thematic analysis was conducted with the assistance of NVivo qualitative software. Analysis identified two main themes: (i) type of consumer involvement and (ii) pros and cons of consumer involvement. Direct consumer involvement (e.g. consumer organisations) in the decision-making process was discussed as a facilitator to guideline communication towards the end of the process. Indirect consumer involvement (e.g. consumer research data) was considered at both the beginning and the end of the process. Cons to consumer involvement included the effect of vested interests on objectivity; consumer disinterest; and complications in terms of time, finance and technical understanding. Pros related to increased credibility and trust in the process. CONCLUSIONS: Stakeholders acknowledged benefits to consumer involvement during the development of dietary guidelines, but remained unclear on the advantage of direct contributions to the scientific content of guidelines. In the absence of established best practice, clarity on the type and reasons for consumer involvement would benefit all actors

The process of setting micronutrient recommendations: a cross-European comparison of nutrition-related scientific advisory bodies

Copyright @ The Authors 2010Objective: To examine the workings of the nutrition-related scientific advisory bodies in Europe, paying particular attention to the internal and external contexts within which they operate. Design: Desk research based on two data collection strategies: a questionnaire completed by key informants in the field of micronutrient recommendations and a case study that focused on mandatory folic acid (FA) fortification. Setting: Questionnaire-based data were collected across thirty-five European countries. The FA fortification case study was conducted in the UK, Norway, Denmark, Germany, Spain, Czech Republic and Hungary. Results: Varied bodies are responsible for setting micronutrient recommendations, each with different statutory and legal models of operation. Transparency is highest where there are standing scientific advisory committees (SAC). Where the standing SAC is created, the range of expertise and the terms of reference for the SAC are determined by the government. Where there is no dedicated SAC, the impetus for the development of micronutrient recommendations and the associated policies comes from interested specialists in the area. This is typically linked with an ad hoc selection of a problem area to consider, lack of openness and transparency in the decisions and over-reliance on international recommendations. Conclusions: Even when there is consensus about the science behind micronutrient recommendations, there is a range of other influences that will affect decisions about the policy approaches to nutrition-related public health. This indicates the need to document the evidence that is drawn upon in the decisions about nutrition policy related to micronutrient intake.This work has been carried out within the EURRECA Network of Excellence (www.eurreca.org) which is financially supported by the Commission of the European Communities, specific Research, Technology and Development (RTD) Programme Quality of Life and Management of Living Resources, within the Sixth Framework Programme, contract no. 036196