Interactive, tailored video decision support about prenatal screening for counselors, vulnerable pregnant women and their partners

PROBLEM DEFINITION Up to 25% of pregnant women do not make an informed decision about prenatal screening: decisions are value-inconsistent and based on insufficient knowledge and deliberation. Counselors have difficulty to provide adequate support for pregnant women and their partners, especially for vulnerable groups (i.e., with limited health literacy skills, low educational level or a migration background). More than one third (36%) of all people have limited health literacy skills; most of them are lower educated or have a migration background. They experience serious problems in understanding health information and taking an active role in decision making. The Health Council (2016) therefore pleas for improved decision support by counselors for pregnant women and their partners. INTERACTIVE, VIDEO-BASED E-LEARNING Interactive, tailored video-based e-learning is a promising strategy to support both counselors as well as pregnant couples. It can be used to (1) train counselors to identify needs of (vulnerable) pregnant women, and to train them in more effective counseling; and (2) train pregnant women and their partners in taking an active role in the counseling, and to gather personally relevant information for informed decision making (i.e., a decision aid). For an example of an interactive, tailored video-based e-learning strategy, see https://oudercoach.guidingtube.com/. Strong points of the interactive, tailored video-based intervention are the use of: (a) audiovisual (videos) rather than textual information to increase vividness and understanding of the information; (b) tailoring to increase relevance and fit to users’ needs; and (c) interaction to stimulate scenario-based and active learning. Interactive, tailored video-based e-learning has been shown to improve provider-patient communication and informed decision making, and to reduce decisional conflict. Such decision support that fit the needs of counselors and pregnant women does not exist for prenatal screening. AIM The project aims to improve informed decision making about prenatal screening by means of a two-component interactive, tailored video-based intervention: (1) a counseling aid for counselors to improve their self-efficacy and communication with pregnant women, which should result in improved shared decision making; and (2) a decision aid for pregnant women and their partners, particularly vulnerable couples, to empower them in taking an active role in the communication with the counselor and to make a more informed decision. The current project is relevant, not only for prenatal screening, but could also be a means for other types of screening or decision making for vulnerable groups and their caregivers. RESEARCH QUESTIONS 1) What are needs and requirements of counselors, pregnant women and their partners for the two-component interactive, tailored video intervention? 2) What is the effectiveness of the two-component intervention compared to usual care on: a) shared decision making (primary outcome) and self-efficacy (secondary outcome) of counselors in prenatal screening counseling? b) shared and informed decision making regarding prenatal screening (primary outcomes), and its determinants (secondary outcomes; e.g., knowledge, attitude, deliberation, self-efficacy, intention, screening uptake) among pregnant women? 3) What is the acceptability and use of the two-component intervention among counselors and pregnant women? DESIGN The effects on shared and informed decision making will be tested by means of a pre-posttest control group design (Randomized Clinical Trail; RCT). Midwifery practices are randomly allocated to the intervention or control condition (i.e., usual care). PLANNING 1) Needs assessment & systematic intervention development (22 months); 2) RCT & data collection (18 months); 3) Data-analyses, publication of results, and preparation for implementation (8 months). ACTIVE PARTICIPATION To ensure fit with their needs, users (counselors, pregnant women, partners) and implementing organizations (Royal Dutch Association of Midwives (KNOV), Academy of Midwifery Studies Maastricht (AVM), National Institute for Public Health and the Environment (RIVM), Pharos, ethics expert, Obstetric Consortium Limburg, Dutch Association of Obstetrics and Gynecology (NVOG)) will be involved in all stages of the project using active participatory methods. Counselors, pregnant women, partners, and (former) low literate people will participate in pretesting of intervention components and the study materials (i.e., informed consent and questionnaire). Participants who are exposed to the intervention will be asked for feedback on their experiences in program use. Besides, a linkage group will be set up from the start of the project. It consists of representatives from the target group and implementing organizations, and they will advise the project team via meetings.