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.
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.
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.
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.
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.
Marcu A, Gaspar R, Rutsaert P, Seibt B, Fletcher D, Verbeke W, Barnett J (2015) Analogies, metaphors, and wondering about the future: Lay sense-making around synthetic meat, Public Understanding of Science 24 (5) pp. 547-562
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.
Verbeke W, Marcu A, Rutsaert P, Gaspar R, Seibt B, Fletcher D, Barnett J (2015) ?Would you eat cultured meat??: Consumers' reactions and attitude formation in Belgium, Portugal and the United Kingdom, Meat Science 102 pp. 49-58
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.
Gaspar R, Luis S, Seibt B, Lima ML, Marcu AM, Rutsaert P, Fletcher D, Verbeke W, Barnett J (2015) Consumers? avoidance of information on red meat risks: information exposure effects on attitudes and perceived knowledge, Journal of Risk Research
Rutsaert P, Barnett J, Gaspar R, Marcu AM, Pieniak Z, Seibt B, Lima LS, Fletcher D, Verbeke W (2015) Beyond information seeking: Consumers? online deliberation about the risks and benefits of red meat, Food Quality and Preference 39 pp. 191-201
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.
Marcu AM, Barnett J, Uzzell D, Vasileiou K, O?Connell S (2013) Experience of Lyme disease and preferences for precautions: a cross-sectional survey of UK patients, BMC Public Health 13 (481) pp. 1-7
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.
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.
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.
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.
Marcu AM, Chryssochoou X (2005) Exclusion of ethnic groups from the realm of humanity: Prejudice against the Gypsies in Britain and in Romania, Psicologia Politica 30 pp. 41-56
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.
Marcu AM, Uzzell D, Barnett J (2011) Making sense of unfamiliar risks in the countryside: The case of Lyme disease, Health & Place 17 (3) pp. 843-850
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.
Quine CP, Barnett J, Dobson ADM, Marcu A, Marzano M, Moseley D, O?Brien L, Randolph SE, Taylor JL, Uzzell D (2011) Frameworks for risk communication and disease management : the case of Lyme disease and countryside users, Philosophical Transactions of the Royal Society of London: Biological Sciences 366 (1573) pp. 2010-2022
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.
Marcu A, Rubinstein H, Michie S, Yardley L (2015) Accounting for personal and professional choices for pandemic influenza vaccination amongst English healthcare workers, Vaccine 33 (19) pp. 2267-2272
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.
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.
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.
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.
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.
Rubinstein H, Marcu A, Yardley L, Michie S (2015) Public preferences for vaccination and antiviral medicines under different pandemic flu outbreak scenarios, BMC Public Health 15 (190) pp. 1-13
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.
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.
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.
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.
Barnett J, Begen F, Howes S, Regan A, McConnon A, Marcu A, Rowntree S, Verbeke W (2016) Consumers' confidence, reflections and response strategies following the horsemeat incident, FOOD CONTROL 59 pp. 721-730 ELSEVIER SCI LTD
Regan Á, Shan L, McConnon Á, Marcu AM, Raats M, Wall P, Barnett J (2014) Strategies for dismissing dietary risks: insights from user-generated comments online, Health, Risk & Society 16 (4) pp. 308-322
Communication around chronic dietary risks has proved challenging as dietary health risks are ostensibly met with attenuated perceptions of their likelihood and consequences. In this article, we examine the strategies that an online public use to negotiate risk messages from expert stakeholders that may be incongruent with their own position on a risk. Progressing from conceptualisations of amplification as laid out in the social amplification of risk framework, we are particularly interested in understanding whether and how amplifications of risk may be attributed towards other stakeholders. The article presents an analysis of comments posted on a website oriented to a British audience. These comments were left by members of the public in reply to two online media articles published in 2012 reporting on an epidemiological study carried out in the United States on the risks of red meat consumption. We found that the comments generally expressed resistance to the risk message, embodied in two main strategies. The first strategy was to discount the message itself by deploying rules of thumb that undermined the applicability of the general risk message to the particularities of the individual. The second strategy was to undermine the risks by casting doubt on the credibility of the message source. Together, these strategies allowed the commenters to argue that the risks and the process of communicating them resulted in an exaggerated picture. These findings highlight that by attributing amplification to others, further polarisation of risk views between stakeholders may occur. Thinking about amplification as an attribution provides a distinct and significant conceptual contribution to the study of incongruent risk responses.
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.
Uzzell D, Vasileiou K, Marcu AM, Barnett J (2012) Whose Lyme is it anyway? Subject positions and the construction of responsibility for managing the health risks from Lyme disease, Health & Place 18 (5) pp. 1101-1109
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.
O'Brien L, Marcu A, Marzano M, Barnett J, Quine C, Uzzell D (2012) Situating risk in the context of a woodland visit: a case study on Lyme Borreliosis, Scottish Forestry 66 (4) pp. 14-24
Regan A, Marcu A, Shan LC, Wall P, Barnett J, McConnon A (2015) Conceptualising responsibility in the aftermath of the horsemeat adulteration incident: an online study with Irish and UK consumers, Health, Risk & Society 17 (2) pp. 149-167
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.
Marcu A, Lyons E, Hegarty P (2007) Dilemmatic human-animal boundaries in Britain and Romania: Post-materialist and materialist dehumanization, BRITISH JOURNAL OF SOCIAL PSYCHOLOGY 46 pp. 875-893 BRITISH PSYCHOLOGICAL SOC
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.
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.
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.
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.
Women aged e47 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.
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.
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).
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 ?rst consultation with a health care professional) may contribute to this inequality.Design. Qualitative comparative study.Methods. Semi-structured interviews with a sample of women (e47 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 con?dence 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 con?dent about interpreting symptoms, seeking information online, and seeking medical help.Conclusions. Our ?ndings 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.
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
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.
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.
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.
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.
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.