Co-creation of a health literate-sensitive training and conversation aid to support shared decision-making in maternity care.

Background: Maternity care increasingly aims to achieve Shared Decision-making (SDM), yet seemingly not to the benefit of clients with low health literacy (HL). We developed an SDM training for healthcare professionals (HCPs) and a conversation aid to support HL-sensitive SDM in maternity care. Methods: The training and conversation aid were based on previous needs assessments and expert consultation, and were developed in co-creation with clients (n = 15) and HCPs (n = 7). Usability, acceptability and comprehension of the conversation aid were tested among new clients (n = 14) and HCPs (n = 6). Acceptability of the training was tested among midwifery students (n = 5). Results: In the co-creation sessions, clients reported to expect that their midwife becomes acquainted with their general values, priorities and daily context. Clients also emphasized wanting to be supported in their preferred decisional role. User test interviews showed that clients and HCPs were positive towards using the conversation aid, but also apprehensive about the time it required. The user test of the training showed that more attention was needed for recognizing and adapting information provision to clients' HL level. Conclusion and innovation: The newly developed conversation aid and training have potential to support HCPs and clients in HL-sensitive SDM.

Information and communication priorities of patients and healthcare professionals in shared decision making regarding adjuvant systemic breast cancer treatment: A survey study.

PURPOSE: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly. METHODS: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis. RESULTS: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics. CONCLUSIONS: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient.

Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

BACKGROUND: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. METHODS: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. RESULTS: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. CONCLUSIONS: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.

Decision-making in breast cancer screening: A qualitative exploration of the match between women's beliefs and screening information in the Netherlands.

OBJECTIVE: Decision-making about breast cancer screening requires balanced and understandable information that takes prior beliefs of screening invitees into account. METHODS: In qualitative interviews with 22 Dutch women who were invited for screening for the first time (49-52 years of age, varying health literacy levels), we gained insight in their beliefs on breast cancer and breast cancer screening, and explored how the current screening information matched these beliefs. RESULTS: Breast cancer was perceived as an unpredictable, severe, and uncontrollable disease. Women considered screening as self-evident and an important mean to gain some control over breast cancer. Information on benefits of screening was in line with women's prior beliefs and confirmed women's main reasons to participate. Information about false-positive outcomes, overtreatment, and false negative outcomes did not correspond to women's prior beliefs and this information was generally not considered relevant for decision-making. Preferences for additional information merely concerned practical information on the screening procedure. CONCLUSION: Complex information on the harms of screening does not match women's beliefs and is not taken into account in their decision-making. PRACTICE IMPLICATIONS: Information regarding breast cancer screening could be further aligned to prior beliefs by taking into account values, filling knowledge gaps and correct misconceptions.

Non-invasive prenatal testing (NIPT): is routinization problematic?

BACKGROUND: The introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. 'Routinization' of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However, it is a heterogeneous phenomenon that needs to be scrutinized in the wider context of social practices of reproductive genetics. In different countries with their different regulatory frameworks, different patterns of routines emerge that have different ethical implications. This paper discusses an ethics of routines informed by the perspectives of organizational sociology and psychology, where a routine is defined as a repetitive, recognizable pattern of interdependent organizational actions that is carried out by multiple performers. We favour a process approach that debunks the view - which gives way to most of the concerns - that routines are always blindly performed. If this is so, routines are therefore not necessarily incompatible with responsible decision-making. Free and informed decision-making can, as we argue, be a key criterion for the ethical evaluation of testing routines. If free and informed decision-making by each pregnant woman is the objective, routines in prenatal testing may not be ethically problematic, but rather are defensible and helpful. We compare recent experiences of NIPT routines in the context of prenatal screening programmes in Germany, Israel and the Netherlands. Notable variation can be observed between these three countries (i) in the levels of routinization around NIPT, (ii) in the scope of routinization, and (iii) in public attitudes toward routinized prenatal testing. CONCLUSION: An ethics of routines in the field of prenatal diagnostics should incorporate and work with the necessary distinctions between levels and forms of routines, in order to develop sound criteria for their evaluation.

Health literate-sensitive shared decision-making in maternity care: needs for support among maternity care professionals in the Netherlands.

BACKGROUND: Shared decision-making (SDM) in maternity care is challenging when clients have insufficient health literacy (HL) skills. This study gained insight in how professionals apply HL-sensitive SDM in Dutch maternity care and their needs for support therein. METHODS: Maternity care professionals (n = 30) completed a survey on SDM and the role of HL. Midwives (n = 13) were observed during simulated conversations discussing pain relief options and interviewed afterwards. The client-actors were instructed to portrait specific inadequate HL skills. Observation items focused on adapting communication to HL, and SDM (OPTION-5). RESULTS: In the survey, professionals indicated experiencing most challenges when estimating clients' information comprehension. Observations showed that most midwives created choice awareness and informed clients about options, whereas exploring preferences and actual decision-making together with clients were observed less frequently. Their perceived HL-related obstacles and needs for support related to clients' information comprehension. In the interviews, midwives reported putting much effort into explaining available options in maternity care, but also that decisions about pain relief are often postponed until the moment of labour. CONCLUSION: Professionals' self-reported needs focus on clients' information comprehension. However, observations indicate that it is not the stage of informing, but rather value clarification and actual decision-making that need improvement in HL-sensitive SDM.

Awareness of a disconnect between the value assigned to health and the effort devoted to health increases the intention to become more physically active.

Background: Intrinsic values and priorities influence decision-making and are, therefore, important to consider explicitly in intervention development. Although health is generally considered an important value, individuals often make unhealthy choices, indicating a values disconnect. Study aim: To investigate how becoming aware of a disconnect between the value assigned to health and the effort devoted to health is related to intentions and commitment for behavioural change and physical activity among inactive adults. Methods: We performed a secondary exploratory analysis on previously collected data. The intervention included a values exercise based on the Disconnected Values Model (DVM) that made disconnected values explicit to participants in two study arms. We compared participants with a disconnect (n = 138) with participants without a disconnect (n = 101) regarding intentions and commitment for behavioural change and physical activity and sitting time 2-4 weeks follow-up. Logistic and linear regression analyses were performed to analyse the data. Results: Between-group differences were found for the intention to devote more effort to health (OR = 3.75; 95%CI: 2.05; 6.86) and for the intention to become more physically active (OR = 2.21; 95%CI: 1.10; 4.46), indicating that significantly more participants with a disconnect were motivated to change, compared to participants without a disconnect. No between-group differences were found for commitment, intention strength, follow-up physical activity and sitting time. Conclusion: Making explicit a disconnect regarding health in an active choice intervention was associated with intentions to become more physically active. Still, it did not translate in significant behaviour change at 2-4 weeks follow-up. Trial registration: ClinicalTrials.gov: NCT04973813. Retrospectively registered. Trial registration: ClinicalTrials.gov identifier: NCT04973813..

Breast cancer patients' visual attention to information in hospital report cards: An eye-tracking study on differences between younger and older female patients.

To (1) explore how women visually attend to a hospital report card (HRC), (2) explore whether visual attention of younger and older women (patients and non-patients) differs. Eye-tracking study with a short survey. Participants (N = 37) were provided with a hypothetical realistic HRC. Total dwell times and fixation counts were measured while participants viewed the information. Overall, no differences existed between younger and older women. Visual attention to the hospital of choice (vs not of choice) and to indicators perceived as most important (vs least important) did not differ. However, women with higher health literacy looked longer at the HRC than women with lower health literacy. Also, per fixation, older patients (vs younger patients) looked longer at the hospital of choice and at indicators perceived most important. Pre-existing conceptions of what information is relevant might result in more in-depth information processing among older patients than younger patients. In general, differences in level of health literacy, rather than (chronological) age, seem to be relevant to take into account when designing and/or updating HRCs.

Conditions for autonomous reproductive decision-making in prenatal screening: A mixed methods study.

BACKGROUND: Pregnant women should be able to make autonomous and meaningful decisions about prenatal screening for fetal abnormalities. It remains largely unclear which circumstances facilitate or hinder such a decision-making process. OBJECTIVE: To investigate what conditions Dutch pregnant women and professional experts consider important for autonomous reproductive decision-making in prenatal screening for fetal abnormalities, and the extent to which, according to women, those conditions are met in practice. METHODS: A mixed methods study was conducted in the Netherlands in 2016-2017. A conceptual model was used to interview professional experts (n = 16) and pregnant women (n = 19). Thematic analysis was performed to identify important conditions. Subsequently, a questionnaire assessed the perceived importance of those conditions and the extent to which these were met, in the experience of pregnant women (n = 200). RESULTS: Professional experts stressed the importance of information provision, and emphasized a rational decision-making model. Pregnant women differed in what information they felt was needed, and this depended on the screening decision made. Questionnaire findings showed that women prioritized discussion and consensus with partners. Information about test accuracy and miscarriage risk of invasive follow-up testing was also considered important. Two key conditions were not adequately met, in the experience of women: (1) having information about miscarriage risk; (2) not being directed by health professionals in decision-making. CONCLUSION: According to women, discussion and consensus with partners was considered a highly important condition for an autonomous and meaningful decision-making process. Access to information about safety of testing and ensuring that women are not being directed in their decision-making by health professionals seem to be areas for improvement in prenatal care practice.

[How to increase the chance of understanding? A perspective on risk communication]. / Hoe vergroot je de kans dat je begrepen wordt?

Risk communication is often seen as summarizing the results of epidemiological research in layman's terms, assuming that this information is sufficient for citizens to make choices. However, many people struggle to understand and make sense of the numbers in which risks are expressed. People also generally do not have an epidemiological view of their health, but use their own experiences and ideas about health and disease that determine how they understand information. Other aspects play a role than just the probability and severity of a negative event such as an illness. It is therefore not surprising that people sometimes make different choices than health professionals. For effective risk communication, it is important to communicate this information in understandable numerical formats, such as natural frequencies. However, this is not enough. Effective risk communication also relates to taking into account the risk perception of citizens or patients.

Promoting an active choice among physically inactive adults: a randomised web-based four-arm experiment.

BACKGROUND: Promoting active (i.e., conscious, autonomous, informed, and value-congruent) choices may improve the effectiveness of physical activity interventions. This web-based four-arm experimental study investigated the effect of promoting an active versus passive choice regarding physical activity on behavioural and psychological outcomes (e.g., physical activity intentions and behaviours, autonomy, commitment) among physically inactive adults. METHODS: Dutch inactive adults were randomized into four groups: physical activity guideline only (control group G), guideline & information (GI), guideline & active choice (GA), or guideline & active choice & action planning (GA +). GA and GA + participants were stimulated to make an active choice by weighing advantages and disadvantages of physical activity, considering personal values, and identifying barriers. GA + participants additionally completed action/coping planning exercises. Passive choice groups G and GI did not receive exercises. Self-reported behavioural outcomes were assessed by a questionnaire pre-intervention (T0, n = 564) and at 2-4 weeks follow-up (T2, n = 493). Psychological outcomes were assessed post-intervention (T1, n = 564) and at follow-up. Regression analyses compared the outcomes of groups GI, GA and GA + with group G. We also conducted sensitivity analyses and a process evaluation. RESULTS: Although promoting an active choice process (i.e., interventions GA and GA +) did not improve intention (T1) or physical activity (T2 versus T0), GA + participants reported higher commitment at T1 (ß = 0.44;95%CI:0.04;0.84) and more frequently perceived an increase in physical activity between T0 and T2 (ß = 2.61;95%CI:1.44;7.72). GA participants also made a more active choice at T1 (ß = 0.16;95%CI:0.04;0.27). The GA and GA + intervention did not significantly increase the remaining outcomes. GI participants reported higher intention strength (ß = 0.64;95%CI:0.15;1.12), autonomy (ß = 0.50;95%CI:0.05;0.95), and commitment (ß = 0.39;95%CI:0.04;0.74), and made a more active choice at T1 (ß = 0.13;95%CI:0.02;0.24). Interestingly, gender and health condition modified the effect on several outcomes. The GA + intervention was somewhat more effective in women. The process evaluation showed that participants varied in how they perceived the intervention. CONCLUSIONS: There is no convincing evidence of a beneficial effect of an active versus passive choice intervention on physical activity intentions and behaviours among inactive adults. Further research should determine whether and how active choice interventions that are gender-sensitized and consider health conditions can effectively increase physical activity. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04973813 . Retrospectively registered.

Dynamics in public perceptions and media coverage during an ongoing outbreak of meningococcal W disease in the Netherlands.

BACKGROUND: From 2015 to 2018, the Netherlands faced an outbreak of invasive meningococcal disease (IMD) caused by serogroup W. To counter the rise in infections, the government introduced a catch-up menACWY vaccination campaign for teenagers in 2018 and 2019. The outbreak situation induced substantial media attention and a run on menACWY vaccines outside the vaccination campaign. This study aimed to gain insights into the dynamics of public perceptions of and responses to the outbreak and the menACWY vaccination, and into the media coverage about the outbreak. METHODS: Three repeated surveys (N = 1110) between 2017 and 2019 were sent to parents of teenagers invited for a menACWY catch-up vaccination, other parents, and individuals with no under-age children. These surveys assessed IMD risk perceptions, attitudes towards the menACWY vaccination, trust in involved institutions, and willingness to vaccinate with the menACWY vaccine. Changes in the public perceptions and responses were studied with linear multilevel regression analyses. In addition, 103 national newspaper articles from the period 2017-2019 were thematically coded with themes about IMD and the menACWY vaccination. RESULTS: The survey results showed clear increases in perceived IMD severity, positive attitude towards the menACWY vaccination, and willingness to vaccinate over time. Perceived IMD vulnerability remained low across all three waves, and trust in involved institutions increased slightly. Differences between the survey groups were limited. The newspaper articles discussed the rise in infections extensively, the disease symptoms, and the possible fatal outcome of IMD. In addition, while many articles discussed the menACWY vaccine shortage, few discussed the safety or effectiveness of the vaccine. CONCLUSION: The real-time insights into the interrelated dynamics of public perceptions, responses, and media coverage provide an integrated portrait of the social developments during this outbreak. The focus on IMD severity and the absence of doubt in the public discussion about vaccine safety may have played an important role in the societal response to this outbreak and the recommended vaccine.

Risk communication about work-related stress disorders in healthcare workers: a scoping review.

PURPOSES: Healthcare workers are at risk of stress-related disorders. Risk communication can be an effective preventive health measure for some health risks, but is not yet common in the prevention of stress-related disorders in an occupational healthcare setting. The overall aim is to examine whether risk communication was part of interventions aimed at the prevention of stress-related disorders in healthcare workers. METHOD: We performed a scoping review using the framework of Arksey and O'Malley. We searched in Medline, Web of Science and PsychInfo for studies reporting on preventive interventions of stress-related disorders in healthcare workers between 2005 and December 2020. Studies were included when the intervention reported on at least one element of risk communication and one goal. We predefined four elements of risk communication: risk perception, communication of early stress symptoms, risk factors and prevention; and three goals: inform, stimulate informed decision-making and motivate action. RESULTS: We included 23 studies that described 17 interventions. None of the included interventions were primarily developed as risk communication interventions, but all addressed the goals. Two interventions used all four elements of risk communication. The prominent mode of delivery was face to face, mostly delivered by researchers. Early stress symptoms and risk factors were measured by surveys. CONCLUSIONS: Risk communication on risk factors and early signs of stress-related disorders is not that well studied and evaluated in an occupational healthcare setting. Overall, the content of the communication was not based on the risk perception of the healthcare workers, which limited the likelihood of them taking action.

Office workers' perspectives on physical activity and sedentary behaviour: a qualitative study.

BACKGROUND: Office workers spend a significant part of their workday sitting. Interventions that aim to reduce sedentary behaviour and increase physical activity might be more effective if greater attention is paid to individual perspectives that influence behavioural choices, including beliefs and values. This study aimed to gain insight into office workers' perspectives on physical activity and sedentary behaviour. METHODS: Sixteen Dutch office workers (50% female) from different professions participated in semi-structured face-to-face interviews in March 2019. To facilitate the interviews, participants received a sensitizing booklet one week before the interview. The booklet aimed to trigger them to reflect on their physical activity and sedentary behaviour and on their values in life. All interviews were audiotaped, transcribed verbatim and coded following codebook thematic analysis. RESULTS: Six themes were identified: 1) beliefs about health effects are specific regarding physical activity, but superficial regarding sedentary behaviour; 2) in addition to 'health' as a value, other values are also given priority; 3) motivations to engage in physical activity mainly stem from prioritizing the value 'health', reflected by a desire to both achieve positive short/mid-term outcomes and to prevent long-term negative outcomes; 4) attitudes towards physical inactivity and sedentary behaviour are diverse and depend on individual values and previous experiences; 5) perceived barriers depend on internal and external factors; 6) supporting factors are related to support and information in the social and physical environment. CONCLUSIONS: The great value that office workers attach to health is reflected in their motivations and attitudes regarding physical activity. Increasing office workers' knowledge of the health risks of prolonged sitting may therefore increase their motivation to sit less. Although 'health' is considered important, other values, including social and work-related values, are sometimes prioritized. We conclude that interventions that aim to reduce sedentary behaviour and increase physical activity among office workers could be improved by informing about health effects of sedentary behaviour and short/mid-term benefits of physical activity, including mental health benefits. Moreover, interventions could frame physical activity as congruent with values and support value-congruent choices. Finally, the work environment could support physical activity and interruption of sedentary behaviour.

Non-invasive prenatal testing (NIPT) and pregnant women's views on good motherhood: a qualitative study.

Women's views on responsible motherhood influence decision-making regarding participation in prenatal screening. Previous studies showed that the probabilistic nature of the first-trimester combined test and the potential requirement for subsequent invasive diagnostics serve as legitimate reasons for women to exclude prenatal screening from their moral responsibilities. These moral barriers might now be less relevant with the introduction of the non-invasive prenatal test (NIPT) resulting in women feeling a moral duty to use NIPT screening as part of responsible motherhood. This qualitative study explores the impact of NIPT on women's moral beliefs about the meaning of prenatal screening in relation to responsible motherhood. We performed semi-structured interviews with 29 pregnant women who were offered NIPT as a first-tier screening test within a Dutch nationwide study (TRIDENT-2). Results show that the inherent uncertainty about the fetus's health despite improved accuracy and the lack of treatment for a detected disorder, combined with the possibility to obtain information about actionable anomalies through the fetal anomaly scan, support women's perspectives that NIPT is not an obligation of responsible motherhood. Acceptance of NIPT is considered to be a free decision related to the information each woman needs to be a good mother for her child and her family. Women's views may change when NIPT has expanded to include treatable or preventable conditions.

Routinization of prenatal screening with the non-invasive prenatal test: pregnant women's perspectives.

Due to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test's favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women's perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was "seeking reassurance" (25.5%), and the main reason to decline was "every child is welcome" (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.

Testing the effects on information use by older versus younger women of modality and narration style in a hospital report card.

BACKGROUND: Hospital report cards (HRCs) are usually presented in a textual and factual format, likely hampering information processing. OBJECTIVE: This study aimed to investigate the effects of audiovisual and narrative information in HRCs on user responses, and to test differences between older and younger women. DESIGN: A 2 (modality [textual vs. audiovisual]) × 3 (narration style [factual vs. process narrative vs. experience narrative]) online experiment was conducted. Information about breast cancer care was used as a case example. Age (younger [<65] vs. older [≥65]) was included as a potential effect modifier. SETTING AND PARTICIPANTS: A total of 631 disease-naïve women (Mage = 56.06) completed an online survey. The outcomes were perceived cognitive load, satisfaction, comprehension, information recall and decisional conflict. Data were analysed using AN(C)OVAs. RESULTS: Audiovisual (vs. textual) information resulted in higher information satisfaction across age groups, but was associated with lower comprehension in older women. An experience narrative (vs. factual information) increased satisfaction with attractiveness and emotional support of the information only in older women. A three-way interaction effect was found, suggesting that older women were most satisfied with the comprehensibility of audiovisual factual or textual process narrative information. Younger women were most satisfied with the comprehensibility of audiovisual process narrative or textual factual information. DISCUSSION AND CONCLUSION: Audiovisual and narrative information in an HRC showed beneficial effects on satisfaction measures. In particular, audiovisual information could be incorporated into HRCs to increase satisfaction with information. PUBLIC CONTRIBUTION: Lay persons helped in optimizing the visuals used in the stimulus materials by checking for clarity.

Informed Decision-Making and Capabilities in Population-based Cancer Screening.

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy-as a right and as an ideal-we describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so.

Information needs during an emerging outbreak of meningococcal W135 disease in the Netherlands: a study among teenagers, their parents and healthcare professionals.

BACKGROUND: To counter the rise in invasive meningococcal disease (IMD) serogroup W, the Netherlands introduced a menACWY catch-up vaccination campaign for teenagers in 2018 and 2019. Teenagers and parents who have questions or who seek advice from a professional about vaccinations are likely to consult a youth healthcare professional or their general practitioner. This study aimed to appraise the ability of these healthcare professionals to meet the information needs of teenagers and their parents at the start of the vaccination campaign. METHODS: With online surveys, we assessed information needs in teenagers (N = 1603) and parents (N = 1784) concerning IMD and the menACWY vaccination, and in healthcare professionals (N = 520) in their communication with teenagers and parents. We additionally studied healthcare professionals' expectations of the information needs of teenagers and parents. RESULTS: We identified several information needs about IMD and the menACWY vaccination in teenagers, parents and healthcare professionals. Some important commonalities in the information needs in these three groups were found, with regard to the topics IMD prevention, vaccine effectiveness and vaccine protection duration. Healthcare professionals' expectations of the information needs of teenagers and parents were quite accurate but some important discrepancies were found. CONCLUSION: Our results suggest that healthcare professionals might not have been optimally equipped or prepared for questions from teenagers and their parents at the beginning of the vaccination campaign. We recommend public health institutes to timely assess and meet information needs about new vaccines in healthcare professionals to optimally equip them for consultations.

The role of the media in the amplification of a contested health risk: Rubber granulate on sport fields.

This study aims to increase insights into the potential role of the media in the amplification and attenuation of modern risks in society, by studying the dynamics and contents of the newspaper coverage about the potential health risk posed by rubber granulate in the Netherlands. We thematically analysed 153 national newspaper articles about the risks posed by rubber granulate between September 2016 and February 2017. Our results suggest that newspaper coverage might have contributed to heightened public risk perceptions by presenting the negligible health risk as uncertain, focusing on controversy between authorities and experts, describing responses such as concerns, commotion, and adopted risk mitigation measures by members of the public, and by providing insufficient contextualization on whether hazardous substances in rubber granulate pose a threat to health. The risks posed by rubber granulate is one of the many modern risks that has become subject to heated and mediated public discussions. Our results provide in-depth insights into important content elements in media coverage during such discussions and the impact of these elements on public perceptions. Public health institutes and other authorities might be able to mitigate the amplification of risks through media coverage by means of appropriate preparedness and response.