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Partners Join In! Developing and validating a new measure assessing Joint Informed Decision Making in prenatal screening

Projectomschrijving

Gedeelde besluitvorming bij prenatale screening

Vraagstuk

Door prenatale screening, zoals de 20 weken echo en de NIPT, kunnen aanstaande ouders meer te weten komen over de (verwachte) gezondheid van hun ongeboren kind. Bij voorkeur kiest de zwangere vrouw samen met haar beslissingspartner (mede-ouder en/of verzorger) of deze prenatale screening wordt uitgevoerd. Het is nu onduidelijk hoe dit gedeelde keuzeproces verloopt en welke impact dit heeft op het uiteindelijke besluit en beslissers.

Onderzoek

We onderzoeken wat belangrijke factoren zijn voor gedeelde besluitvorming bij prenatale screening. We vragen zwangere vrouwen en hun beslissingspartners, prenatale zorgverleners en wetenschappers naar hun ervaringen. Die informatie wordt gecombineerd in een gedeelde besluitvorming vragenlijst. Daarna testen we de kwaliteit (validiteit) van de vragenlijst.

Verwachte uitkomst

Dit project geeft inzicht in het proces en de gevolgen van gedeelde besluitvorming; mogelijke aanknopingspunten voor verbetering van gedeelde keuzeprocessen.

Meer over pre- en neonatale screening

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Samenvatting van de aanvraag

Within the context of a pregnant woman’s moral and legal rights regarding her bodily integrity, there is general consensus that both prospective parents should be involved to some extent in an informed decision making process when considering prenatal screening options, leading to an informed choice. Informed choice occurs when decisional partners make a deliberate choice, based on an assessment of relevant knowledge and consistency with decision-makers’ values. Informed choice is commonly assessed by combining measures of an individual’s knowledge, attitudes, deliberation and actual choice. Currently available Informed Decision Making (IDM) instruments have been used to assess IDM in expecting mothers only and do not take the joint decision making process into account. Furthermore, limited information regarding their validity is available. This project therefore aims to develop a measure for Joint IDM (J-IDM), based on existing IDM measure content, together with relevant stakeholders (pregnant women and their Decisional Partners, health care professionals, and IDM and J-IDM experts) and submit the J-IDM measure to rigorous validity testing. The resulting measure will provide better insight into how prospective parents make prenatal screening decisions together. Knowledge gained from this project can be used to develop J-IDM measures in situations where more than one individual is involved in decision making, e.g. vaccination. The project will also lead to the identification of key strategies to stimulate J-IDM through support programs, such as patient decision aids or health professional training modules. In order to accomplish this, we propose the following activities: ACTIVITY 1: EXPLORATION OF THE J-IDM PROCESS Two in-depth investigations of experiences with and attitudes towards the process of J-IDM will be conducted through qualitative interviews with 40 pregnant women and their Decisional Partners (activity 1a) and 20 health care professionals involved in prenatal screening counseling (e.g. midwives and gynecologists; (activity 1b). ACTIVITY 2: EXPLORATION OF CONSENSUS REGARDING J-IDM CONCEPTUALIZATION An online three-round Delphi study will be conducted with 60-80 IDM and J-IDM experts to explore relevant sub-constructs and/or criteria of J-IDM (e.g. individual and joint characteristics), measurement level (i.e. dichotomy vs. scale) and J-IDM score calculation (e.g. weighing of criteria). ACTIVITY 3: DEVELOPMENT OF THE PROTOTYPE J-IDM MEASURE A conceptual framework of J-IDM within the context of prenatal screening and a J-IDM measure prototype will be developed; its content and face validity will be assessed by 10 (non-)pregnant Decisional Partners and 10 prenatal health professionals. ACTIVITY 4: ASSESSMENT OF RELIABILITY AND VALIDITY OF J-IDM MEASURE PROTOTYPE 240 dyads (i.e. pregnant women and their Decisional Partner) will be asked to independently complete the prototype J-IDM measure at two time points: immediately after making a prenatal screening decision (baseline) and 1 month later. Internal consistency, construct validity, concurrent validity and test-retest validity will be explored and items will be revised accordingly. Associations between the J-IDM measure prototype (sub)scales and Decisional outcomes (i.e. Decisional Empowerment, Decisional Regret, Decisional Conflict, Satisfaction with Decision Making) will be assessed. Potential moderating and/or mediating effects of demographic variables, Dyadic Decision Making process and Decision Making Role Preference (Evaluation) will also be explored. Based on findings from activity 1-4, the J-IDM measure will be finalized. ACTIVITY 5: DISSEMINATION OF THE J-IDM MEASURE The J-IDM measure and user manual, as well as the conceptual framework and stakeholder-specific fact sheets, will be made available online and offline and presented to all stakeholders during a J-IDM project closing symposium. Non-attending stakeholder representative organizations will be contacted to further increase exposure of the J-IDM measure. Data collected during the course of this project will be made available by means of an online data repository.

Kenmerken

Projectnummer:
543002009
Looptijd: 82%
Looptijd: 82 %
2020
2025
Onderdeel van programma:
Gerelateerde subsidieronde:
Projectleider en penvoerder:
C Hoving PhD
Verantwoordelijke organisatie:
Maastricht University