Dr Afrodita Marcu
Academic and research departmentsSchool of Health Sciences.
I am a Research Fellow (RA II) in the School of Health Sciences. My research focuses on the psychosocial aspects of cancer prevention, cancer early diagnosis and cancer care.
I graduated with a PhD in Social Psychology at the University of Surrey in 2007, where my doctoral research focused on the dehumanization of ethnic groups, in particular the Roma (Gypsy) minority. After completing my doctorate, I worked at the University of Surrey from 2008 to 2010 as Research Fellow on an ESRC-funded interdisciplinary project relating to risk perception and risk communication about Lyme disease. From 2011 to 2013 I worked as Research Fellow at Brunel University on the EU FP-7 project FoodRisC concerned with how consumers deliberate around food risks and benefits. Before moving back to the University of Surrey in 2015, I worked as Research Fellow at the University of Southampton on a project funded by the Department of Health which was concerned with risk communication about pandemic flu and improving public uptake of flu vaccination in the event of a new flu pandemic.
My research interests pertain largely to the psychological processes and behaviours prior to receiving a cancer diagnosis, such as symptom interpretation and help-seeking for symptoms suggestive of cancer; cancer risk perceptions and uptake of precautionary behaviours such as cancer screening; behaviour change interventions to promote early presentation with cancer symptoms (e.g. breast cancer); developing PPI in cancer research; co-producing behaviour change interventions in relation to symptomatic presentation.
Affiliations and memberships
Research projects Co-producing an intervention toolkit with and for women of Black African and Black Caribbean descent to promote early presentation with breast cancer symptoms
This project is an Individual Development Award funded by the NIHR Applied Research Collaboration Kent, Surrey and Sussex. The project is concerned with ethnic inequalities in breast cancer outcomes in the UK, where women of Black Caribbean and Black African descent are more likely to be diagnosed with advanced breast cancer and die from the disease than White women. The aim is to co-produce an intervention toolkit to be delivered in primary and community healthcare settings to promote timely presentation with breast cancer symptoms among women of Black Caribbean and Black African descent. Closing the engagement gap: creating Research Champions to promote patient and public involvement and engagement in mesothelioma research
This project, funded by the June Hancock Mesothelioma Research Fund in 2019, is concerned with developing a sustainable way to provide patient and public involvement and engagement (PPI/E) in mesothelioma research. During this project, the research team will train ‘research champions’ among people living with mesothelioma or their family members to be involved as PPI/E representatives in research studies that address various aspects of mesothelioma (diagnosis, clinical trials, psychosocial support, etc.). Promoting Early Presentation with breast cancer symptoms in Black African and Black Caribbean women in the UK
This project, funded by the University of Surrey, is concerned with improving breast cancer outcomes in Black African and Black Caribbean women living in the UK. These groups have historically had worse cancer outcomes (higher mortality) than White British women. We have conducted focus groups with Black Caribbean and Black African women, some of them with a history of breast cancer, and have explored their views on how an existing intervention to promote early presentation with breast cancer symptoms could be adapted and delivered to Black women in the UK.
This project is an Individual Development Award funded by the NIHR Applied Research Collaboration Kent, Surrey and Sussex. The project is concerned with ethnic inequalities in breast cancer outcomes in the UK, where women of Black Caribbean and Black African descent are more likely to be diagnosed with advanced breast cancer and die from the disease than White women. The aim is to co-produce an intervention toolkit to be delivered in primary and community healthcare settings to promote timely presentation with breast cancer symptoms among women of Black Caribbean and Black African descent.
This project, funded by the June Hancock Mesothelioma Research Fund in 2019, is concerned with developing a sustainable way to provide patient and public involvement and engagement (PPI/E) in mesothelioma research. During this project, the research team will train ‘research champions’ among people living with mesothelioma or their family members to be involved as PPI/E representatives in research studies that address various aspects of mesothelioma (diagnosis, clinical trials, psychosocial support, etc.).
This project, funded by the University of Surrey, is concerned with improving breast cancer outcomes in Black African and Black Caribbean women living in the UK. These groups have historically had worse cancer outcomes (higher mortality) than White British women. We have conducted focus groups with Black Caribbean and Black African women, some of them with a history of breast cancer, and have explored their views on how an existing intervention to promote early presentation with breast cancer symptoms could be adapted and delivered to Black women in the UK.
Postgraduate research supervision
I am currently co-supervising two PhD students in the School of Health Sciences on the topics:
- exploring inequalities in breast cancer outcomes through the lens of intersectionality (funded by the Doctoral College)
- understanding breast cancer screening uptake among women of Black African descent in the UK (funded through the 'SURREY BLACK SCHOLARS: To Become Visible' studentship scheme 2022)
I recently co-supervised a PhD student in the School of Health Sciences who explored the experience of cancer patients in Ghana and their motivations to use traditional medicine in conjunction with conventional medicine (PhD awarded in 2020). Thesis title: "Understanding cancer patients' motivations and experiences in using traditional healers in Ghana: A Grounded Theory Approach". The student was awarded the Rosemary Pope memorial fund award for PhD thesis making a significant contribution to the study of healthcare education and practice.
I am interested in supervising postgraduate students who wish to research health-related topics such as: ethnic inequalities in cancer; risk perception and risk communication in relation to influenza vaccination; experience of receiving a cancer diagnosis; experience of being diagnosed with Lyme disease.
In the past I co-supervised MSc students on the topics:
- how lay people reach a diagnosis of chronic Lyme disease (submitted 2019, School of Psychology)
- service evaluation of school-delivered nasal flu jab to school children (submitted 2019, School of Health Sciences)
Background During the 2009-2010 A(H1N1) pandemic, many people did not seek care quickly enough, failed to take a full course of antivirals despite being authorised to receive them, and were not vaccinated. Understanding facilitators and barriers to the uptake of vaccination and antiviral medicines will help inform campaigns in future pandemic influenza outbreaks. Increasing uptake of vaccines and antiviral medicines may need to address a range of drivers of behaviour. The aim was to identify facilitators of and barriers to being vaccinated and taking antiviral medicines in uncertain and severe pandemic influenza scenarios using a theoretical model of behaviour change, COM-B. Methods Focus groups and interviews with 71 members of the public in England who varied in their at-risk status. Participants responded to uncertain and severe scenarios, and to messages giving advice on vaccination and antiviral medicines. Data were thematically analysed using the theoretical framework provided by the COM-B model. Results Influences on uptake of vaccines and antiviral medicines - capabilities, motivations and opportunities - are part of an inter-related behavioural system and different components influenced each other. An identity of being healthy and immune from infection was invoked to explain feelings of invulnerability and hence a reduced need to be vaccinated, especially during an uncertain scenario. The identity of being a ‘healthy person’ also included beliefs about avoiding medicine and allowing the body to fight disease ‘naturally’. This was given as a reason for using alternative precautionary behaviours to vaccination. This identity could be held by those not at-risk and by those who were clinically at-risk. Conclusions Promoters and barriers to being vaccinated and taking antiviral medicines are multi-dimensional and communications to promote uptake are likely to be most effective if they address several components of behaviour. The benefit of using the COM-B model is that it is at the core of an approach that can identify effective strategies for behaviour change and communications for the future. Identity beliefs were salient for decisions about vaccination. Communications should confront identity beliefs about being a ‘healthy person’ who is immune from infection by addressing how vaccination can boost wellbeing and immunity.
Background Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research. Methods An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis. Results In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients’ needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: “Motivations to become a PPI representative in the future”, “Understanding the nature of PPI during the project”, and “Perceived challenges to PPI in mesothelioma”. Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language. Conclusions The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.
IntroductionPersistent inequalities in cancer care and cancer outcomes exist within and between countries. However, the evidence pertaining to the root causes driving cancer inequalities is mixed. This may be explained by the inadequate attention paid to experiences of patients with cancer living at the intersection of multiple social categories (eg, social class, ethnicity). This is supported by the intersectionality framework. This framework offers an alternative lens through which to analyse and understand how these interlocking systems of oppression uniquely shape the experiences of patients with cancer and drive inequalities. In this protocol, we outline a scoping review that will systematically map what is known about the relationship between intersectionality and inequalities in care experience and cancer outcomes of patients with cancer; and to determine how the intersectionality framework has been applied in studies across the cancer care pathway and across countries.Methods and analysisThis study will be guided by Arksey and O’Malley’s, and Levac et al’s frameworks for scoping reviews. We will identify and map the evidence on cancer inequalities and intersectionality from 1989 to present date. Electronic databases (EMBASE, PsychINFO, CINAHL, Medline, Web of Science, ProQuest) and a systematic search strategy using a combination of keywords and Boolean operators AND/OR will be used to identify relevant studies. Screening of eligible papers and data extraction will be conducted by two independent reviewers, and disagreements resolved by discussion with the research team. We will use an iterative process to data charting using a piloted form. Findings will be collated into a narrative report.Ethics and disseminationEthical approval is not required since data used are from publicly available secondary sources. Findings will be disseminated through peer-reviewed journals, conferences and stakeholder meetings. Further, findings will inform the next phases of a multistage research project aimed at understanding inequalities among patients with breast cancer.
Drawing on social representations theory, we explore how the public make sense of the unfamiliar, taking as the example a novel technology: synthetic meat. Data from an online deliberation study and eighteen focus groups in Belgium, Portugal and the UK indicated that the various strategies of sense-making afforded different levels of critical thinking about synthetic meat. Anchoring to genetic modification, metaphors like ‘Frankenfoods’ and commonplaces like ‘playing God’ closed off debates around potential applications of synthetic meat, whereas asking factual and rhetorical questions about it, weighing up pragmatically its risks and benefits, and envisaging changing current mentalities or behaviours in order to adapt to scientific developments enabled a consideration of synthetic meat’s possible implications for agriculture, environment, and society. We suggest that research on public understanding of technology should cultivate a climate of active thinking and should encourage questioning during the process of sense-making to try to reduce unhelpful anchoring.
Cultured meat has evolved from an idea and concept into a reality with the August 2013 cultured hamburger tasting in London. Still, how consumers conceive cultured meat is largely an open question. This study addresses consumers' reactions and attitude formation towards cultured meat through analyzing focus group discussions and online deliberations with 179 meat consumers from Belgium, Portugal and the United Kingdom. Initial reactions when learning about cultured meat were underpinned by feelings of disgust and considerations of unnaturalness. Consumers saw few direct personal benefits but they were more open to perceiving global societal benefits relating to the environment and global food security. Both personal and societal risks were framed in terms of uncertainties about safety and health, and possible adverse societal consequences dealing with loss of farming and eating traditions and rural livelihoods. Further reflection pertained to skepticism about ‘the inevitable’ scientific progress, concern about risk governance and control, and need for regulation and proper labeling.
Successfully engaging consumers in a dialogue may provide opportunities for better tailored and more effective communication about food-related risks and benefits. Using an online deliberation concept and software, VIZZATA™, we explored the validity of a behavioral measure of deliberation in an online environment in the context of consumers’ perceptions and information seeking about the risks and benefits of red meat. Participants from Belgium, Portugal and the United Kingdom (n = 150) were given the opportunity to engage in an asynchronous interaction with the research team about the information provided. Online deliberation was operationalized as an individual metric based on the number of questions asked in relation to the information, the number of comments left, the number of glossary terms accessed, and the time spent on deliberative activity. This operationalization provided a coherent measure of deliberation which was positively correlated with information recall about the risks and benefits of red meat. Participants who perceived the information about red meat risks and benefits as too complex engaged less with the information. The study herewith presents a novel method of investigating consumers’ deliberation about food issues that conceptualizes consumer engagement as more than just information seeking.
Background Stage at diagnosis of breast cancer varies by socio-economic status (SES), with lower SES associated with poorer survival. We investigated associations between SES (indexed by education), and the likelihood of attributing breast symptoms to breast cancer. Method We conducted an online survey with 961 women (47-92 years) with variable educational levels. Two vignettes depicted familiar and unfamiliar breast changes (axillary lump and nipple rash). Without making breast cancer explicit, women were asked ‘What do you think this […..] could be?’ After the attribution question, women were asked to indicate their level of agreement with a cancer avoidance statement (‘I would not want to know if I have breast cancer’). Results Women were more likely to mention cancer as a possible cause of an axillary lump (64%) compared with nipple rash (30%). In multivariable analysis, low and mid education were independently associated with being less likely to attribute a nipple rash to cancer (OR 0.51, 0.36-0.73 and OR 0.55, 0.40-0.77, respectively). For axillary lump, low education was associated with lower likelihood of mentioning cancer as a possible cause (OR 0.58, 0.41-0.83). Although cancer avoidance was also associated with lower education, the association between education and lower likelihood of making a cancer attribution was independent. Conclusion Lower education was associated with lower likelihood of making cancer attributions for both symptoms, also after adjustment for cancer avoidance. Lower likelihood of considering cancer may delay symptomatic presentation and contribute to educational differences in stage at diagnosis.
Background: Net survival rates for cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer care of cancer survivors - individuals living with and beyond cancer - to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and healthcare professionals, is an important contributor to this evolving model of care and may offer additional benefits to cancer survivors. Telehealth is a complex intervention and understanding patient experiences of it is important in evaluating its impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth have yet to be synthesised. Objective: Systematically identify, appraise and synthesise qualitative research evidence on the experiences of adult cancer survivors participating in telehealth intervention(s), to characterise the patient experience of telehealth interventions for this group. Methods: Medline (PubMed), PsychINFO, CINAHL (Cumulative Index for Nursing and Allied Health Professionals), Embase and Cochrane Central Register of Controlled Trial were searched on 14th August 2015 and 8th March 2016 for English-language papers published between 2006 and 2016. Inclusion criteria were: adult cancer survivors aged 18 and over; cancer diagnosis; experience of participating in a telehealth intervention (defined as remote communication and/or remote monitoring with a healthcare professional(s) delivered by telephone, internet, or hand-held/mobile technology); reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) Checklist for Qualitative Research was used to assess paper quality. The results section of each included article was coded line by line and all papers underwent inductive analysis, involving comparison, re-examination and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results: 22 papers were included. Three analytical themes emerged, each with three descriptive subthemes: 1. Influence of telehealth on the disrupted lives of cancer survivors a. Convenience b. Independence c. Burden 2. Personalised care in a virtual world a. Time b. Space c. The human factor 3. Remote reassurance – a safety net of healthcare professional connection a. Active connection b. Passive connection c. Slipping through the net Telehealth interventions represent a convenient approach which can potentially minimise treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalised care and reassurance for those living with and beyond cancer, but it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions: Telehealth interventions can provide cancer survivors with both independence and reassurance; both important for everyday life or wellbeing. Future telehealth interventions need to be developed iteratively and in collaboration with a broad range of cancer survivors to maximise engagement and benefit.
Objective. Vaccination is an effective preventive measure to reduce influenza transmission, especially important in a pandemic. Despite messages encouraging vaccination during the last pandemic, uptake remained low (37.6% in clinical risk groups). This study investigated the effect of different types of messages regarding length, content type, and framing on vaccination intention. Method. An online experiment was conducted in February 2015. A representative sample of 1424 people living in England read a mock newspaper article about a novel influenza pandemic before being randomised to one of four conditions: standard Department of Health (DoH) (long message) and three brief theory-based messages - an abridged version of the standard DoH and two messages additionally targeting pandemic influenza severity and vaccination benefits (framed as risk-reducing or healthenhancing, respectively). Intention to be vaccinated and potential mediators were measured. Results. The shortened DoH message increased vaccination intention more than the longer one, by increasing perceived susceptibility, anticipated regret and perceived message personal relevance while lowering perceived costs, despite the longer one being rated as slightly more credible. Intention to be vaccinated was not improved by adding information on severity and benefits, and the health-enhancing message was not more effective than the risk-reducing. Conclusion. A briefer message resulted in greater intention to be vaccinated, whereas emphasising the severity of pandemic influenza and the benefits of vaccination did not. Future campaigns should consider using brief theoretically-based messages, targeting knowledge about influenza and precautionary measures, perceived susceptibility to pandemic influenza, and the perceived efficacy and reduced costs of vaccination.
Following the discovery of horsemeat in beef products in Europe in 2013, restoring consumers' confidence in processed meat products as well as in all the agencies involved – producers, food safety authorities, retailers – soon became a key priority. However, the European public's confidence in processed meat products and their views about government and industry actions to manage fraudulent practices in the wake of this incident are poorly understood. The objective of this study was to identify the core issues affecting consumers' confidence in the food industry, particularly in the meat processing sector, and to explore the impact of the horsemeat incident on consumers' purchasing and eating behaviour. It involved the use of an online deliberation tool VIZZATA™ to collect detailed views of 61 consumers in the UK and the Republic of Ireland. Many participants reported buying fewer products containing processed meat as a result of the horsemeat incident. These respondents also claimed that their confidence in processed foods containing meat was lower than before the incident. Participants suggested restoring consumer confidence through improved traceability, sourcing local ingredients, providing clearer and correct labelling and stating the origin of meat on pack. Overall, findings indicate that rebuilding consumer confidence in processed meat products following a food adulteration episode is a multifaceted and difficult process. Food authorities and the food industry can benefit from the insights provided by this study to address issues affecting consumer confidence and to improve their communication strategies during future food adulteration incidents.
Objective: Socioeconomic inequalities in recognising signs and symptoms of cancer may result in inequalities in timely help-seeking and subsequent prognosis of breast cancer. We explored the mediating role of symptom attribution and concern on the relationship between level of education and help-seeking for potential breast cancer symptoms. Methods: Women aged ≥47 years (n=961) were purposively recruited (by education) to complete an online vignette-based survey that included nipple rash and axillary lump (in separate vignettes) as potential symptoms of breast cancer. Women completed questions relating to medical help-seeking (Yes/No), cancer attribution, symptom concern, cancer avoidance, family history and demographics. Results: Women with low education and mid-education attributed nipple rash less often to cancer (26% and 27% mentioned cancer) than women with a degree or higher (40%). However, women with a degree or higher (63%) or mid-education (64%) were less likely to anticipate seeking help for the nipple rash than women with no formal qualifications (73%). This association was statistically significant in the 60-69 year old age group. There was no significant association between education and help-seeking for axillary lump. Mediation analysis adjusting for potential confounders confirmed that the association between education and help-seeking for nipple rash was fully mediated by symptom concern. Conclusions: Socioeconomic inequalities in stage at diagnosis and survival of breast cancer may not always be explained by lower likelihood of suspecting cancer and subsequent impact on help-seeking. Reducing inequalities in stage at diagnosis will involve understanding a broader range of bio-psycho-social factors (e.g. comorbidities, healthcare system factors).
Background: Vaccination is considered the most effective preventive measure against influenza transmission, yet vaccination rates during the 2009/10 influenza A/H1N1 pandemic were low across the world, with the majority of people declining to receive the vaccine. Despite extensive research on the predictors of uptake of influenza vaccination, little research has focused on testing the effectiveness of evidence and theory-based messages. Aims: To examine the persuasiveness of messages promoting vaccination and antiviral use either as health-enhancing or as risk-reducing, as well as messages which conveyed evidence-based information about the costs and benefits of vaccination, or which applied anticipated regret as a motivator for vaccine uptake. Method: We conducted 11 focus groups with forty-one members of the general population in England including young and older adults, those with lower education, parents, and those with elevated health risk. The data were analysed using thematic analysis. Results: The factual, evidence-based messages were well received with participants finding them the most convincing and useful, particularly where they gave cost-benefit comparisons. Health-enhancing messages were received with scepticism and concern that the messages were not honest about the potential lack of safety of vaccination. In contrast, risk-reduction messages were perceived as being more balanced and credible. Messages aiming to elicit feelings of anticipated regret for not getting vaccinated were generally perceived as patronising and unprofessional. Conclusions: Vaccination messages should be kept brief, but convey balanced, evidence-based information, and be transparent in their communication of potential side-effects. The general public seem to prefer messages that are factual and emphasise the costs and benefits of vaccination, particularly with regards to vaccine safety.
Background Healthcare workers (HCWs) are encouraged to get vaccinated during influenza pandemics to reduce their own, and patients’, risk of infection, and to encourage their patients to get immunised. Despite extensive research on HCWs’ receipt of vaccination, little is known about how HCWs articulate pandemic influenza vaccination advice to patients. Aims To explore HCWs’ uptake of the A/H1N1 vaccine during the pandemic of 2009-2010, their recommendations to patients at the time, and their anticipated choices around influenza vaccination under different pandemic scenarios. Method We conducted semi-structured interviews and focus groups with eight vaccinated and seventeen non-vaccinated HCWs from primary care practices in England. The data was analysed using thematic analysis. Results The HCWs constructed their receipt of vaccination as a personal choice informed by personal health history and perceptions of vaccine safety, while they viewed patients’ vaccination as choices made following informed consent and medical guidelines. Some HCWs received the A/H1N1 vaccine under the influence of their local practice organizational norms and values. While non-vaccinated HCWs regarded patients’ vaccination as patients’ choice, some vaccinated HCWs saw it also as a public health issue. The non-vaccinated HCWs emphasised that they would not allow their personal choices to influence the advice they gave to patients, whereas some vaccinated HCWs believed that by getting vaccinated themselves they could provide a reassuring example to patients, particularly those who have concerns about influenza vaccination. All HCWs indicated they would accept vaccination under a severe pandemic scenario. However, most non-vaccinated HCWs expressed reticence to vaccinate under the mild pandemic scenario. Conclusions Providing evidence-based arguments about the safety of new vaccines and the priority of public health over personal choice, and creating strong social norms for influenza vaccination as part of the organizational culture, should increase uptake of influenza vaccination among primary care HCWs and their patients.
Objective. Advanced stage at diagnosis for breast cancer is associated with lower socio-economic status (SES). We explored what factors in the patient interval (time from noticing a bodily change to ﬁrst consultation with a health care professional) may contribute to this inequality.Design. Qualitative comparative study.Methods. Semi-structured interviews with a sample of women (≥47 years) from higher(n = 15) and lower (n = 15) educational backgrounds, who had experienced at least one potential breast cancer symptom. Half the participants ( n = 15) had sought medical help,half had not (n = 15). Without making breast cancer explicit, we elicited women’s sense-making around their symptoms and help-seeking decisions.Results. Containment of symptoms and conﬁdence in acting upon symptoms emerged as two broad themes that differentiated lower and higher educational groups. Women from lower educational backgrounds tended to attribute their breast symptoms to trivial factors and were reticent in using the word ‘cancer’. Despite ‘knowing’ that symptoms could be related to cancer, women with lower education invoked lack of medical knowledge – ‘I am not a doctor’ – to express uncertainty about interpreting symptoms and accessing help. Women with higher education were conﬁdent about interpreting symptoms, seeking information online, and seeking medical help.Conclusions. Our ﬁndings suggest that knowledge of breast cancer alone may not explain socio-economic differences in how women respond to breast cancer symptoms as women with lower education had ‘reasons’ not to react. Research is needed on how to overcome a wider spectrum of psycho-social factors to reduce future inequality.
Management of zoonotic disease is necessary if countryside users are to gain benefit rather than suffer harm from their activities, and to avoid disproportionate reaction to novel threats. We introduce a conceptual framework based on the pressure–state–response model with five broad responses to disease incidence. Influencing public behaviour is one response and requires risk communication based on an integration of knowledge about the disease with an understanding of how publics respond to precautionary advice. A second framework emphasizes how risk communication involves more than information provision and should address dimensions including points-of-intervention over time, place and audience. The frameworks are developed by reference to tick-borne Lyme borreliosis (also known as Lyme disease), for which informed precautionary behaviour is particularly relevant. Interventions to influence behaviour can be directed by knowledge of spatial and temporal variation of tick abundance, what constitutes risky behaviour, how people respond to information of varying content, and an understanding of the social practices related to countryside use. The frameworks clarify the response options and help identify who is responsible for risk communication. These aspects are not consistently understood, and may result in an underestimation of the role of land-based organizations in facilitating appropriate precautionary behaviour.
The focus of this paper is on how popular representations of the countryside provide countryside users with a discursive framework to make sense of unfamiliar countryside-based risks, taking Lyme disease as an example. Sixty-six semi-structured interviews were conducted with 82 visitors in Richmond Park, New Forest, and Exmoor National Park in the UK. The data were analysed using thematic analysis and was informed by social representations theory. The analysis indicated that a lay understanding of the risk of Lyme disease was filtered by place-attachment and the social representations of the countryside. Lyme disease was not understood primarily as a risk to health, but was instead constructed as a risk to the social and restorative practices in the context of the countryside. The findings suggest that advice about zoonoses such as Lyme disease is unlikely to cause panic, and that it should focus on the least intrusive preventative measures.
Background: People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the Internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis, and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. Objective: We explored women’s symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participants’ online searches and visited websites, the VIZZATATM browser tracker. Methods: An online survey was completed by 56 cancer-free women (Mage = 60.34 years, SD = 7.73 years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (Time1) and again after seeking information online (Time2). The online tracking tool, embedded in the survey, was used to capture in real time participants’ search terms and accessed websites. Results: The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (n=10, 18%), there was evidence of engagement in online information-seeking, e.g. medical terminology and cancer attribution at Time2, despite their searching activity not being recorded. Twenty five participants considered cancer as a potential cause for the nipple rash at Time1, yet only one of these used ‘cancer’ as a search term. Most participants (n=40, 87%) used rash-related search terms, particularly ‘nipple rash’ and ‘rash on nipple’. The majority (41/46, 89%) accessed websites containing breast cancer information, with the NHS webpage “Paget’s disease of the nipple” being the most visited one. At Time2, after engaging in the Internet search task, more participants attributed the nipple rash to breast cancer than at Time1, n=37 (66.1%) vs. n=25 (44.6%), although a small number of participants (n=6) changed from making a cancer attribution at Time1 to a non-cancer one at Time2. Conclusions: Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all Internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms. ClinicalTrial: N/A
How people trust the internet and seek health information online when experiencing and interpreting potential cancer symptoms is not well understood. We interviewed twenty-seven women who had recently experienced at least one potential breast cancer symptom, and explored their symptom experience, help-seeking strategies, and whether they consulted the internet in relation to their symptoms. We conducted a thematic analysis and constructed a typology of attitudes towards, and experiences of, consulting the internet about the symptoms: i) confident; ii) neutral; iii) hesitant; and iv) avoidant. ‘Hesitant’ and ‘avoidant’ participants rarely mentioned cancer explicitly, doubted being able to interpret the information found online, and expressed concerns over finding ‘scaremongering’ information or making incorrect self-diagnosis. The ‘avoiders’ and the ‘hesitant’ participants perceived online information-seeking as being inherently risky, partly because online health content is likely to be inaccurate or exaggerated, and partly because the process of lay interpretation is likely to be flawed by lack of medical expertise. The findings suggest that not all women experiencing potential breast cancer symptoms seek health information online spontaneously or trust the internet as a legitimate source of health information. The women who did engage in online information seeking, particularly those with lower education, felt unsure about how to appraise online health sources to interpret their symptoms
Oesophageal cancer (EC) is characterized by vague symptoms and is often diagnosed at an advanced stage, leading to poor outcomes. Therefore, we aimed to investigate whether there might be any patient factors contributing to delay in EC diagnosis, and focused on the symptom appraisal and help-seeking strategies of people diagnosed with EC in the UK. Semi-structured interviews were conducted with 14 patients aged >18 years with localised EC at point of diagnosis. Purposive sampling was used to include patients from one to nine months post-diagnosis. Analysis of the interviews identified three main themes: Interpreting symptoms, Triggers to seeking help, and Making sense of an unfamiliar cancer. Findings suggested that participants normalised symptoms or used previous health experiences as a means to interpret their symptoms. The majority of participants were not alarmed by their symptoms, mainly because they had very little knowledge of EC specific symptoms. Lack of knowledge also influenced participants’ sense-making of their diagnosis. The findings highlight that the process of symptom appraisal in EC is likely to be inaccurate, which may hinder early presentation and thus diagnosis. Public health campaigns communicating EC specific symptoms, however, could shorten the appraisal period and lead to earlier diagnosis.
Background Lyme disease (LD) is a tick-borne zoonosis currently affecting approximately 1000 people annually in the UK (confirmed through serological diagnosis) although it is estimated that the real figures may be as high as 3000 cases. It is important to know what factors may predict correct appraisal of LD symptoms and how the experience of LD might predict preferences for future precautionary actions. Methods A cross-sectional survey was conducted with early LD patients via the Lyme Borreliosis Unit at the Health Protection Agency. One hundred and thirty participants completed measures of awareness of having been bitten by ticks, knowledge of ticks and LD, interpretation of LD symptoms, suspicions of having LD prior to seeing the General Practitioner (GP), and preferences for precautionary actions during future countryside visits. Chi-square tests and logistic regression were used to identify key predictors of awareness of having been bitten by ticks and of having LD. t-tests assessed differences between groups of participants on suspicions of having LD and preferences for future precautions. Pearson correlations examined relationships between measures of preferences for precautions and frequency of countryside use, knowledge of ticks and LD, and intentions to avoid the countryside in the future. Results 73.8% of participants (n = 96) reported a skin rash as the reason for seeking medical help, and 44.1% (n = 64) suspected they had LD before seeing the GP. Participants reporting a direct event in realizing they had been bitten by ticks (seeing a tick on skin or seeing a skin rash and linking it to tick bites) were more likely to suspect they had LD before seeing the doctor. Participants distinguished between taking precautions against tick bites during vs. after countryside visits, largely preferring the latter. Also, the more frequently participants visited the countryside, the less likely they were to endorse during-visit precautions. Conclusions The results suggest that the risk of LD is set in the context of the restorative benefits of countryside practices, and that it may be counterproductive to overemphasize pre- or during-visit precautions. Simultaneously, having experienced LD is not associated with any withdrawal from countryside.
There has been a significant increase during the last decade in the UK of the incidence of the Lyme disease. It is transmitted through tick bites, and can have serious health consequences if not treated early. This study examined how the responsibility for managing and communicating the health risks from Lyme disease to forest workers and recreational visitors was constructed and acted upon by 21 interviewees in key managerial positions within one of the largest UK forestry organisations. The in-depth, semi-structured interviews were analysed using discourse analysis within a Foucauldian framework. The results demonstrated that the construction of responsibility towards the workforce and visitors was embedded into broader representations of the forest as a working, recreational and natural environment, as well as into the binary conceptualisation of forest hazards as natural and human-made. These constructions prescribed respective subject positions which differentially informed assumptions of responsibility, and consequent actions, towards the workforce and the public.
Theories of dehumanization generally assume a single clear-cut, value-free and non-dilemmatic boundary between the categories 'human' and 'animal'. The present study highlights the relevance of dilemmas involved in drawing that boundary. In six focus groups carried out in Romania and Britain, 42 participants were challenged to think about dilemmas pertaining to animal and human life. Four themes were identified: rational autonomy, sentience, speciesism and maintaining materialist and post-materialist values. Sentience made animals resemble humans, while humans' rational autonomy made them distinctive. Speciesism underlay the human participants' prioritization of their own interests over those of animals, and a conservative consensus that the existing social system could not change supported this speciesism when it was challenged. Romanian participants appealed to Romania's lack of modernity and British participants to Britain's modernity to justify such conservatism. The findings suggest that the human-animal boundary is not essentialized; rather it seems that such boundary is constructed in a dilemmatic and post hoc way. Implications for theories of dehumanization are discussed.
Research shows that people value woodlands for relaxation and as a place to have contact with nature. Yet woodlands can also involve exposure to a variety of risks. In this study the way in which people consider issues of risk in environments generally associated with a range of positive values was explored with visitors to a woodland in South East England. A walk through the woods taking photographs, focus group discussions and questionnaires were the methods used in this research with four groups of people from a range of ages. We focused on the positive and negative aspects of woodlands and discussed risks that might be encountered in this environment before focusing specifically on Lyme borreliosis (Lyme disease) as an example of a specific risk. Those involved in the research understood that there are potential risks that may have an impact on their use of woodlands. However, they did not passively accept information on risks but generated their own understanding based on the development of what they considered to be ‘common sense’ approaches to dealing with risk. The way in which people value woodlands is something they take into consideration when discussing risks that might be encountered on a woodland visit. In relation to Lyme borreliosis, participants favour taking action after their woodland visit (e.g. looking for ticks or a rash), rather than beforehand, so as not to detract from their woodland experience. Communication about these risks should be simple and concise and take into account the values, behaviours and practices that people typically undertake in these environments.
Objectives: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. Design: Scoping review. Search strategy: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner’s decision-making and their psychosocial outcomes during and after pregnancy. Data extraction and synthesis: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal’s self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. Results: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. Conclusions: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.
Objective: Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. Methods: Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. Results: Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. Conclusion: Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.
Purpose: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Method: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis. Results: Three themes were generated from the data: Changing lives, Changing roles; Confidence in caring, and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes. Conclusions: This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened.
Introduction: Initiation of injectable therapies in type 2 diabetes (T2D) is often delayed, however the reasons why are not fully understood. Methods: A mixed methods study performed in sequential phases. Phase 1: focus groups with people with T2D (injectable naı¨venaı¨ve [n = 12] and experienced [n = 5]) and healthcare professionals (HCPs; nurses [n = 5] and general practitioners (GPs) [n = 7]) to understand their
Lay appraisals of risk rely not so much on perceptions of risk per se as on the social representations of the risks at stake (Joffe, 2003). In the case of zoonoses, i.e. diseases which can be transmitted from animals to humans, perceptions of risk may be anchored in the social representations of animals and in the social practices that put humans at risk from animals. The animals' perceived utility to humans, their status in the human culture, and the wider ideology of speciesism (Singer, 1990) can influence the perceptions of risk of zoonoses. The present research investigated how people perceived danger and risk of zoonoses from animals, and explored whether presenting animals in images vs. text would influence the perceptions of risk. A card-sorting task was adopted, its open-ended format allowing the researchers to explore the reasoning behind the sorting of the elements. 25 target animals, including insects, mammals, and arachnids, were represented in both text and image cards, but separately. 12 participants were allocated to one of the two conditions, and completed 3 free and 3 structured sorts, the latter asking them to sort the animals in terms of their dangerousness, their likelihood of transmitting disease, and the emotions that they aroused in the participants. The results provide a pictorial representation of the extent to which the elements were viewed as similar or as different to each other. In both the danger and the disease sorts, the insects and the arachnids were grouped together and separately from the mammals, regardless of the study condition. The animals' perceived likelihood to transmit disease was underpinned by their categorization as dirty and as scavenger in the free sorts. More animals were perceived as likely to transmit disease in the image than in the text condition. In this talk we will reflect on the implications of using text vs. images in relation to the research on risk of zoonoses. We will discuss the results in relation to the social and ideological contexts in which the social representations of animals and the risk of zoonoses are constructed.
The countryside is simultaneously a working environment and a place with recreational and restorative benefits. This poses a range of dilemmas for those responsible for managing potential risks both to those that work and those that visit. One key dilemma relating to visitors in particular concerns the requirement to warn and to encourage appropriate behaviour, without causing alarm. The present research explored the perception and management of hazards in the countryside from the perspective of forest managers who have responsibility for staff and public safety. Individual telephone interviews with 17 forest managers from across the UK explored their perception of forest hazards and risk, and their experience of communicating these to staff and the public. The analysis was informed by thematic analysis (Braun & Clarke, 2006) and discursive psychology (Edwards & Potter, 1992) as we were interested in the construction of ‘forest hazards and risks’ in talk and in strategies of justification and attribution. Participants distinguished between different categories of hazard, such as natural vs. man-made. Both patterns of responsibility for risk management and constructions of likely responsiveness to risk communication varied between staff and the public. Public facing risk communications strategies were underpinned by a balancing act between managing risks and informing the public without causing unnecessary alarm.
Many people take great pleasure in spending time in the great outdoors and still more are being encouraged to visit green spaces to improve their health and well-being. Although considerable evidence supports the benefits of spending time in the countryside, little is known about how best to warn visitors of potential risks and encourage appropriate behaviour without causing alarm. With a focus on Lyme disease, an interdisciplinary research team is exploring the possible impact of zoonotic diseases on the development of recreation in rural areas, within an overarching framework of risk communication. Lyme disease (also known as Lyme borreliosis) is an infectious disease caused by the bacterium Borrelia burgdorferi s.l. Lyme disease is found in a number of wild animal hosts and can be transferred to humans by infected ticks. It is important to understand how individuals, groups and organizations respond to the risk of zoonotic diseases in order to improve the provision of risk information and the strategies of risk communication. The presentations in this symposium will focus on visitors’ actual behaviour in the countryside, visitors’ perceptions of zoonotic risk, and on organizations’ communication strategies in relation to zoonoses. Overall, this session will advance our understanding of risk perceptions and risk behaviour among visitors and organizations strategies of risk communication. How does visitors’ behaviour expose them to risk of Lyme disease? The first presentation will focus on people’s risk awareness and landscape preference assessed via GPS tracking and behavioural observations. This research explores the spatial use by recreational users and associated levels of preventative behaviour, and will lead to the development of an agent-based model of potential risk of contact between users and ticks. Are visitors aware of Lyme disease and where do they place ticks among other countryside hazards? The second presentation will draw on individual interviews conducted with visitors in the countryside to explore visitors’ perceptions of risk of Lyme disease and their attitudes towards risk communication. This research maps the visitors’ denial of hazards in restorative environments such as parks and countryside, and their optimistic bias regarding their own invulnerability to Lyme disease. The implications of the visitors’ lack of receptivity to risk communication will be discussed. How do forest and countryside organizations provide information about zoonotic risks to their visitors? An analysis of leaflets on ticks and Lyme disease and 20 semi-structured interviews with organization representatives give insight into the current understanding of the disease and preferred methods for information provision. Overall, the results indicate a lack of clarity within organisations as to where risk information is held and how it is provided. The implications for the communication of zoonotic risk will be discussed.
Social representations of causes of illness can have an impact on prevention and treatment, such as in the case of Lyme disease which is transmitted by ticks. The present research investigated how people conceptualized ticks in relation to other arachnids and insects, and whether presenting ticks in image vs. text would have an impact on their anchoring. A card-sorting task was adopted, its open-ended format allowing the researchers to explore the reasoning behind the sorting of the elements. 25 cards were generated, including ticks, insects, mammals, and other arachnids A pilot study had indicated that ticks were mostly associated with insects, disgust, fear, blood-sucking, and disease. These were represented in both word and image cards, but separately. 12 participants were allocated to one of the two conditions, words vs. images, and completed 3 free and 3 structured sorts, the latter asking them to sort the elements in terms of their dangerousness, their likelihood of transmitting disease, and the emotions they aroused. The results provide a pictorial representation of the extent to which the elements were viewed as similar or as different to each other. The animals’ perceived likelihood to transmit disease was underpinned by their categorization as dirty and as scavenger in the free sorts. The insects and the arachnids perceived as likely to transmit disease were those that feed on human blood and skin. More animals were perceived as likely to transmit disease in the image than in the text condition. In this talk we will reflect on the implications of using text vs. images in relation to risk imagery research.
Understanding how consumers react to what is happening as a crisis evolves is crucial for those charged with risk management and risk communication. Responsibility, blame and accountability are important concepts in any crisis, particularly when consumer confidence has been damaged. In this article, we examine to what extent, and to what effect, responsibility, blame and accountability figure in consumer reactions in the immediate aftermath of a food crisis. The data we draw on in this article is derived from an online engagement study that took place in ‘real time’ as the crisis unfolded. Through this study, we were able to explore how consumers responded to the adulteration of processed beef products with horsemeat in early 2013 in Ireland and the UK. We found that consumers attributed causal responsibility and allocated blame for the adulteration to three factors: the deliberately deceitful practices of the food industry, the complexity of the food supply chain and demand from (other) consumers for cheap food. We found that consumers were willing to begin the process of rebuilding their confidence in the food system and accountability was viewed as the primary means for restoring confidence.
Prejudice against ethnic minorities is investigated not only as the establishment of difference between social groups on valued dimensions but also as the denial of similarities that would prevent the inclusion of both ingroups and outgroups in the superordinate category of human-beings. The present study sought to explore the two concepts that are advanced to describe the phenomenon of dehumanisation of outgroups: their ontologisation and their infra-humanisation in relation to the Gypsy minority. British and Romanian participants were asked to rate their national ingroup and the Gypsies using characteristics judged typically human and typically animal following the ontologisation and infrahumanisation literature. The results indicated that the ontologisation of the Gypsies occurs in both national samples whereas their infra-humanisation is only verified for the British participants. The implications of these findings are discussed from the perspectives of the infrahumanisation and ontologisation.