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.

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.

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).

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 can build supportive new social networks.

Women's Participation in Decision-Making in Maternity Care: A Qualitative Exploration of Clients' Health Literacy Skills and Needs for Support.

Shared decision-making requires adequate functional health literacy (HL) skills from clients to understand information, as well as interactive and critical HL skills to obtain, appraise and apply information about available options. This study aimed to explore women's HL skills and needs for support regarding shared decision-making in maternity care. In-depth interviews were held among women in Dutch maternity care who scored low (n = 10) and high (n = 13) on basic health literacy screening test(s). HL skills and perceived needs for support were identified through thematic analysis. Women appeared to be highly engaged in the decision-making process. They mentioned searching and selecting general information about pregnancy and labor, constructing their preferences based on their own pre-existing knowledge and experiences and by discussions with partners and significant others. However, women with low basic skills and primigravida perceived difficulties in finding reliable information, understanding probabilistic information, constructing preferences based on benefit/harm information and preparing for consultations. Women also emphasized dealing with uncertainties, changing circumstances of pregnancy and labor, and emotions. Maternity care professionals could further support clients by guiding them towards reliable information. To facilitate participation in decision-making, preparing women for consultations (e.g., agenda setting) and supporting them in a timely manner to understand benefit/harm information seem important.

The impact of communicating uncertain test results in cancer genetic counseling: A systematic mixed studies review.

OBJECTIVE: Cancer genetic counseling increasingly involves discussing uncertain test results, for example because multiple genes are sequenced simultaneously. This review was performed to provide insight into how counselors' communication of uncertain test results during genetic counseling for cancer affects counselors and counselees. METHODS: A systematic mixed studies review was undertaken to review research on the effects of communicating uncertain test results. Four databases were searched using a PICO search strategy. Study findings of articles meeting the inclusion criteria were synthesized narratively. RESULTS: Twenty-four articles were included. Uncertain test results encompassed either an inconclusive test result or a variant of unknown significance (VUS). Counselees involved almost exclusively women at risk of hereditary breast and/or ovarian cancer. None of the articles reported effects on counselor outcomes. Counselee outcomes were categorized as cognitive, affective or behavioral. Interpretation of a VUS was overall reported as difficult, and counselees' distress and worry were repeatedly found to decrease over time after the discussion of any uncertain test result. For most other outcomes, findings were sparse and/or inconsistent. CONCLUSION: Evidence on effects on counselee outcomes is scant and inconsistent. Future studies are warranted to provide insight into how counselees and counselors are affected. PRACTICE IMPLICATIONS: Clinical practice could benefit from guidelines on how to address uncertain test results during pre- and posttest genetic consultations.

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.

Clinician-patient communication during the diagnostic workup: The ABIDE project.

INTRODUCTION: We aimed to describe clinician-patient communication in the diagnostic process of memory clinics, specifically clinician behavior known to facilitate knowledgeable participation of patients during consultations. METHODS: In this multicenter, observational study, we audio-recorded routine diagnostic consultations of 41 clinicians and 136 patients/caregivers at eight memory clinics. Patients/caregivers completed surveys after each audiotaped consultation. We used a study-specific coding scheme to categorize communication behavior. RESULTS: Clinicians often provided information on (results of) diagnostic testing. They infrequently invited questions and/or checked understanding. Clinician behavior to involve patients in decision-making about diagnostic testing was limited. Of note, patients/caregivers rarely expressed their information or involvement preferences. Yet, approximately, one quarter of them would have liked to receive more information. DISCUSSION: Involving patients more explicitly by means of shared decision-making could benefit the quality of care provided in memory clinics because it enables clinicians to attune the diagnostic workup to the individual patient's needs.

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.

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

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.

Uncertainty in consultations about genetic testing for cancer: an explorative observational study.

OBJECTIVE: Persons seeking cancer genetic counseling mainly aim to obtain information and certainty about their medical situation. However, the information that counselees receive often involves many uncertainties. To develop strategies to enable optimal communication about uncertainties, the spectrum of uncertainty expressed within cancer genetic counseling needs to be established. This study aimed to gain insight into the uncertainties verbally expressed by counselors and counselees. METHODS: Twenty-five consultations were audiotaped, transcribed and qualitatively analyzed. A coding scheme identifying all uncertainties was developed parallel to the coding of the transcripts. RESULTS: Several uncertainties were identified varying in their source (i.e. the cause of uncertainty) and the issues involved (i.e. the topic to which uncertainty pertained). The main sources of uncertainty were the unpredictability of the future and a lack of knowledge. Counselees also expressed uncertainty related to the amount and complexity of the information. Counselors expressed uncertainties mainly related to scientific issues, whereas counselees' uncertainty mainly related to personal and practical issues. CONCLUSION: A wide range of uncertainties was expressed by both groups. Counselors differ from counselees in the degree and types of uncertainty they express. PRACTICE IMPLICATIONS: Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees.

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.