Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease. (April 2022)

• Record Type: Journal Article
• Authors: Sood, Erica; Gramszlo, Colette; Perez Ramirez, Alejandra; Braley, Katherine; Butler, Samantha C; Davis, Jo Ann; Divanovic, Allison A; Edwards, Lindsay A; Kasparian, Nadine; Kelly, Sarah L; Neely, Trent; Ortinau, Cynthia M; Riegel, Erin; Shillingford, Amanda J; Kazak, Anne E
• Is Part Of: Journal of patient experience. Volume 9(2022)
• Publication Date: 2022-04
• Subjects: behavioral health -- cardiovascular disease -- caregiving -- community engagement -- patient engagement -- qualitative methods; Patient satisfaction -- Periodicals; Patient satisfaction -- United States -- Periodicals; Patient participation -- Periodicals; Patient participation -- United States -- Periodicals; Patient satisfaction; Patient participation; United States; 362.1068
• DOI: 10.1177/23743735221092488
• Languages: English
• ISSNs: 2374-3735

Abstract

Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems. Participants were 41 diverse parents of children with prenatally diagnosed CHD across the 8 health systems. Qualitative data were collected through online crowdsourcing and quantitative data were collected through electronic surveys to inform intervention co-design. Phases of intervention co-design were: (I) Engage stakeholders in selection of intervention goals/outcomes; (II) Engage stakeholders in selection of intervention elements; (III) Obtain stakeholder input to increase intervention uptake/utility; (IV) Obtain stakeholder input on aspects of intervention design; and (V) Obtain stakeholder input on selection of outcome measures. Parent participants anticipated the resulting intervention, HEARTPrep, would be acceptable, useful, and feasible for parents expecting a baby with CHD. This model of intervention co-design could be used for the development of healthcare interventions across chronic diseases.