Systematic development of materials for inviting low health-literate individuals to participate in preconception counseling

In this study we aimed to systematically analyze problems in the recruitment of women with low health literacy for preconception counseling and to adapt and evaluate written invitations for this group. In a problem analysis (stage 1) we used structured interviews (n = 72) to assess comprehension of the initial invitations, perception of perinatal risks, attitude and intention to participate in preconception counseling. These outcomes were used to adapt the invitation. The adapted flyer was pretested in interviews (n = 16) (stage 2) and evaluated in structured interviews among a new group of women (n = 67) (stage 3). Differences between women in stages 1 and 3 regarding comprehension, risk perception, attitude and intention to participate in counseling were analyzed by linear regression analysis and chi-square tests. Women in stage 3 (who read the adapted flyer) had a more positive attitude towards participation in preconception counselling and a better understanding of how to apply for a consultation than women in stage 1 (who read the initial invitations). No differences were found in intention to participate in preconception counseling and risk perception. Systematic adaptation of written invitations can improve the recruitment of low health-literate women for preconception counselling. Further research should gain insight into additional strategies to reach and inform this group

Challenges and solutions in communication with patients with low health literacy: Perspectives of healthcare providers

Insights in the challenges that healthcare providers encounter in serving low health literate patients is lagging behind. This study explored challenges perceived by healthcare providers and provides strategies in communication with low health literate patients. Primary and secondary healthcare providers (N = 396) filled in an online survey. We assessed the frequency of challenges prior to, during and following a consultation, and which strategies were used and recommended. Survey outcomes were validated in in-depth interviews with healthcare providers (N = 7). Providers (76%) reported one or more challenges that were subscribed to patients’ difficulties in comprehending or applying health-related information, in communicating with professionals, or in taking responsibility for their health. Providers (31%) perceived difficulties in recognizing low health literate patients, and 50% rarely used health literacy specific materials. Providers expressed needs for support to recognize and discuss low health literacy, to adapt communication and to assess patient’s comprehension. Future research should focus on developing strategies for providers to ensure patients’ understanding (e.g. applying teach-back method), to recognize low health literate patients, and to support patients’ in taking responsibility for their health (e.g. motivational interviewing)

Challenges and solutions in communication with patients with low health literacy:Perspectives of healthcare providers

Insights in the challenges that healthcare providers encounter in serving low health literate patients is lagging behind. This study explored challenges perceived by healthcare providers and provides strategies in communication with low health literate patients. Primary and secondary healthcare providers (N = 396) filled in an online survey. We assessed the frequency of challenges prior to, during and following a consultation, and which strategies were used and recommended. Survey outcomes were validated in in-depth interviews with healthcare providers (N = 7). Providers (76%) reported one or more challenges that were subscribed to patients' difficulties in comprehending or applying health-related information, in communicating with professionals, or in taking responsibility for their health. Providers (31%) perceived difficulties in recognizing low health literate patients, and 50% rarely used health literacy specific materials. Providers expressed needs for support to recognize and discuss low health literacy, to adapt communication and to assess patient's comprehension. Future research should focus on developing strategies for providers to ensure patients' understanding (e.g. applying teach-back method), to recognize low health literate patients, and to support patients' in taking responsibility for their health (e.g. motivational interviewing)

Determinants of adherence to recommendations for cancer prevention among Lynch Syndrome mutation carriers: A qualitative exploration

Background: Lynch Syndrome (LS) mutation carriers are at high risk for various cancer types, particularly colorectal cancer. Adherence to lifestyle and body weight recommendations for cancer prevention may lower this risk. To promote adherence to these recommendations, knowledge on determinants of adherence in LS mutation carriers is needed. Therefore, this study aimed to identify determinants of adherence to lifestyle recommendations for cancer prevention in LS mutation carriers. Methods: Five focus groups were conducted with DNA confirmed LS mutation carriers (n = 29). Transcripts were analyzed by thematic analysis, using the Health Belief Model (HBM) as a theoretical framework. Results: Tolerance of an unhealthy lifestyle because of the desire to enjoy life and avoidance of LS dominating their life were most frequently reported as important barriers of adherence to the recommendations. Most important facilitators of adherence to the recommendations were enhancement of wellbeing and intolerance of unhealthy foods due to colon surgery. Conclusions: This study provided a comprehensive overview of determinants of adherence to recommendations for cancer prevention. These determinants, of which some are typically and unique for LS mutation carriers, can be used to design a lifestyle intervention that meets the needs of LS mutation carriers

Preconception counselling for low health literate women: an exploration of determinants in the Netherlands

Abstract Background Women from lower socioeconomic groups tend to be at greater risk of adverse perinatal outcomes, but are less likely to participate in preconception counselling compared to higher socioeconomic groups. This could be partly because of their limited skills to assess, understand and use health related information in ways that promote and maintain good health (health literacy skills). In this study we explored determinants of participation in preconception counselling among women with low health literacy in The Netherlands. Methods Potential determinants of participation in preconception counselling were derived from the literature, and mapped onto a theoretical framework, which was tested for perceived relevance and completeness in an expert review (n = 20). The framework was used to prepare face-to-face interviews with women with low health literacy and a wish to conceive (n = 139). In the interviews we explored preconception counselling awareness, knowledge, considerations, subjective norms, self-efficacy, attitude, and intention. Linear regression analyses were used to test associations with intention to participate in preconception counselling. Results Most women (75%) were unaware of the concept of preconception counselling and the provision of counselling, even if they lived in areas where written invitations had been disseminated. Common considerations for participation were: preparation for pregnancy; perceived lack of information; and problems in a previous pregnancy. Considerations not to participate were mostly related to perceived sufficient knowledge and perceived low risk of perinatal problems. Respondents generally had a positive attitude towards participation in preconception counselling for themselves, and 41% reported that they would participate in preconception counselling. Conclusion Women with low health literacy were generally unaware of the concept and provision of preconception counselling, but seemed to be interested in participation. Further research should investigate how to effectively reach and inform this group about preconception counselling. This knowledge is essential for evidence-based development of interventions to increase the accessibility and understanding of preconception counselling

Smoking cessation among disadvantaged young women during and after pregnancy: Exploring the role of social networks

Objective: Smoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged, European women. This research aims to gain insight into the role of social networks on smoking cessation among disadvantaged young women during and after pregnancy. Design: Qualitative interview study. Setting: Dutch preventive care program (VoorZorg). Participants: Disadvantaged young women during and after pregnancy (n = 17) who participated in a Dutch preventive care program, and members in their social networks (n = 4). Methods: All qualitative interviews were recorded, transcribed, and analyzed by iterative coding processes. Findings: Many women were not intrinsically motivated to quit smoking due to, amongst other factors, difficulties in their lives (e.g. domestic violence, psychosocial problems), limited supportive social networks, and a strong dependence on relatives who smoked. Women seemed to be prompted to smoke by smoking cues in their social networks, while distancing from smokers would lead to feelings of social exclusion. When attempting to stop smoking, women experienced little encouragement from their social networks, which instead often undermined their smoking cessation efforts. Key conclusions and implications for practice: The social networks of disadvantaged young women mostly had a negative role on their smoking cessation efforts. Our results emphasize the need to look at interventions that involve women's social networks, and explore novel opportunities, such as eHealth and mHealth applications so that these women cancan build supportive new social networks

Smoking cessation among disadvantaged young women during and after pregnancy: Exploring the role of social networks

Objective: Smoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged, European women. This research aims to gain insight into the role of social networks on smoking cessation among disadvantaged young women during and after pregnancy. Design: Qualitative interview study. Setting: Dutch preventive care program (VoorZorg). Participants: Disadvantaged young women during and after pregnancy (n = 17) who participated in a Dutch preventive care program, and members in their social networks (n = 4). Methods: All qualitative interviews were recorded, transcribed, and analyzed by iterative coding processes. Findings: Many women were not intrinsically motivated to quit smoking due to, amongst other factors, difficulties in their lives (e.g. domestic violence, psychosocial problems), limited supportive social networks, and a strong dependence on relatives who smoked. Women seemed to be prompted to smoke by smoking cues in their social networks, while distancing from smokers would lead to feelings of social exclusion. When attempting to stop smoking, women experienced little encouragement from their social networks, which instead often undermined their smoking cessation efforts. Key conclusions and implications for practice: The social networks of disadvantaged young women mostly had a negative role on their smoking cessation efforts. Our results emphasize the need to look at interventions that involve women's social networks, and explore novel opportunities, such as eHealth and mHealth applications so that these women cancan build supportive new social networks

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views

Multigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty, for example when variants of unknown significance are identified. This study explores counsellors’ and counselees’ experiences with uncertainty, and how they discuss uncertainties and decide about multigene panel testing. Six focus groups were conducted including 38 counsellors. Twelve counselees who had received genetic counselling about a multigene panel test were interviewed. The focus group sessions and interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively by two independent coders and data were examined to obtain a comprehensive list of themes. Counsellors identified several uncertainties, e.g. finding a variant of unknown significance, or detecting an unsolicited finding. Most difficulty was experienced in deciding what uncertain information to communicate to counselees and how to do so. The extent and manner of providing uncertain information differed between centres and between counsellors. Counsellors attached more value to counselees’ preferences in decision making compared to less extended tests. Counselees experienced difficulty in recalling which uncertainties had been discussed during genetic counselling. They primarily reported to have experienced uncertainty about their own and their relatives’ risk of developing cancer. Counselees felt they had had a say in the decision. This study showed that counsellors need more guidance on whether and how to convey uncertainty. Undesirable practice variation in the communication of uncertainty may be prevented by determining what information should minimally be discussed to enable informed decision making