Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease

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.

A randomized controlled trial to assess the impact of psychoeducation on the quality of life of parents with children with congenital heart defects—Quantitative component

“…Recent investigation has focused on parental perspectives and needs to guide the development of psychoeducational/psychosocial interventions to support parents and to promote positive outcomes for the child, parents and family (Gramszlo, Karpyn, Christofferson, et al, 2020; Gramszlo, Karpyn, Demianczyk, et al, 2020; Sood et al, 2022). Gramszlo et al (2020) reported several modifiable factors that can be changed to potentially reduce parental distress and promote positive developmental outcomes for infants with CHD, such as support partnership in their child's care, promoting self‐care, facilitating communication process with providers, preparing parents for challenges after hospitalization, providing education about child neurodevelopment and helping parents engage in social support (Gramszlo, Karpyn, Christofferson, et al, 2020).…”

“…We aligned with the consensus recommendations from the Association for European Paediatric and Congenital Cardiology Psychosocial Working Group about multidisciplinary family‐centred psychosocial care for patients with CHD, published in 2018 (Utens et al, 2018). This document advocates a holistic approach and emphasizes the need for family‐based psychosocial interventions soon after the initial diagnosis to prevent long‐term adverse psychological effects (Sood et al, 2022; Utens et al, 2018). Parent Mental Health and Family Functioning Working Group summarised the steps to guide an intervention design: the development of an efficacious intervention to improve parent's mental health and family functioning, to promote psychosocial adaptation and to achieve the best possible neurodevelopmental and psychosocial outcomes for children with CHD (Sood et al, 2021).…”

“…Parental psychosocial resources and support are described in the literature as modifiable factors influencing the adaptation process and constitute possible intervention targets (David Vainberg et al, 2019; Demianczyk et al, 2022; Gramszlo, Karpyn, Demianczyk, et al, 2020; Jackson et al, 2015; Lisanti, 2018; Sood et al, 2022; Williams et al, 2019; Woolf‐King et al, 2017). Despite that, in most cases, the attention has been focused on the sick newborn and the ideal holistic approach has been forgotten (David Vainberg et al, 2019; Williams et al, 2019).…”

“…Having a child with a CHD is a very stressful life event that conduces to a crisis and implies reorganizing functions and acquiring new roles inside and outside the family across the lifespan (Albuquerque et al, 2011; Fonseca et al, 2012; Lisanti, 2018). As a consequence of the inability of parents to cope satisfactorily with these challenges, they usually complain about problems in physical health, mental health (trauma/post‐traumatic stress, psychological distress, somatization, anxiety, depression), reduction in overall wellbeing and quality of life (QoL) (Albuquerque et al, 2011; Biber et al, 2019; Demianczyk et al, 2022; Fonseca et al, 2012; Jackson et al, 2015; Kolaitis et al, 2017; Lisanti, 2018; McCubbin & Patterson, 1983; Silva et al, 2023; Sood et al, 2018; Sood et al, 2022; Woolf‐King et al, 2017). In other words, acute and chronic parental stress contribute to their allostatic load (Lisanti, 2018).…”

“…In other words, acute and chronic parental stress contribute to their allostatic load (Lisanti, 2018). Parents of children with CHD are significantly vulnerable to mental health problems (Demianczyk et al, 2022; Gramszlo, Karpyn, Demianczyk, et al, 2020; Sood et al, 2021; Sood et al, 2022; Woolf‐King et al, 2017). Some studies suggest that fathers may experience stress differently than mothers and have distinct coping mechanisms reflected in different mental health symptoms presented (Lisanti, 2018; Sood et al, 2021).…”