JMIR Publications

ABSTRACT

Background:

Up to 25% of pregnant couples in the Netherlands do not make an informed decision about prenatal screening: their decisions are value-inconsistent and/or based on insufficient knowledge and deliberation. Over 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. Therefore, the Dutch Health Council recommends improving decision support for pregnant couples.

Objective:

The aim of this paper is to describe the rationale and systematic design of an online interactive decision aid about prenatal screening for pregnant couples with limited health literacy skills, and an e-learning for counsellors.

Methods:

The Intervention Mapping (IM) framework was used for the iterative user-centered development of the decision aid prenatal screening and e-learning for counsellors. This includes the following steps: 1) a needs assessment among the target group (i.e., pregnant couples and counsellors), 2) defining change objectives based on the needs assessment, 3) selection of theoretical methods, 4) program production, 5) implementation planning, and 6) preparation for evaluation. Three prototypes of the decision aid were iteratively tested among pregnant couples, counsellors, individuals with low literacy and stakeholders relevant for future implementation. This article describes step 1 to 4 of the development of both the decision aid and e-learning.

Results:

We developed a decision aid for pregnant couples and an e-learning for counsellors, both conforming to users’ needs and wishes. The decision aid, guided by a virtual assistant, was aimed at promoting informed decision-making among pregnant couples on prenatal screening. To comply with users’ need for information concerning the screening and potential implications, it includes the following four interactive modules: 1) Other people’s experiences, 2) Information about the tests, 3) Help me decide, and 4) Further questions. To increase accessibility, it features a menu that allows for adapting the speed of speech, making use of subtitles, and is offered in three different languages. The e-learning, aimed at increasing counsellors’ sensitivity for understanding barriers that people with limited health literacy skills face and ways to improve their counselling, includes 5 modules on recognizing and adequately supporting pregnant couples in decision-making regarding prenatal screening. The decision aid can be used as stand-alone tool for pregnant couples and together with the counsellor during counselling.

Conclusions:

By describing the systematic development of the decision aid for prenatal screening to support pregnant couples to make a well-informed choice about prenatal screening, and an e-learning to assist counsellors in counselling with extra attention paid to pregnant couples with limited health literacy we aimed to contribute to systematic reporting and transparent design of interventions. Clinical Trial: ISRCTN18016226