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
Nemours Cardiac Center, Nemours Children's Hospital Delaware, Wilmington, DE, USA.
Nemours Center for Healthcare Delivery Science, Nemours Children's Hospital Delaware, Wilmington, DE, USA.
J Patient Exp. 2022 Apr 20;9:23743735221092488. doi: 10.1177/23743735221092488. eCollection 2022.
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, , 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.
来自不同利益相关者的意见对于设计医疗保健干预措施的过程至关重要。本研究采用了一种新颖的混合方法、利益相关者参与式方法,共同设计一种针对患有先天性心脏病(CHD)胎儿的母亲及其伴侣的心理社会干预措施,以促进家庭幸福。研究团队包括来自8个卫生系统的家长和临床医生。参与者是来自8个卫生系统的41名患有产前诊断为CHD儿童的不同家长。通过在线众包收集定性数据,并通过电子调查收集定量数据,以为干预措施的共同设计提供信息。干预措施共同设计的阶段包括:(I)让利益相关者参与干预目标/结果的选择;(II)让利益相关者参与干预要素的选择;(III)获取利益相关者的意见以提高干预措施的接受度/实用性;(IV)获取利益相关者对干预设计方面的意见;以及(V)获取利益相关者对结果测量选择的意见。家长参与者预计,最终的干预措施对于患有CHD胎儿的母亲来说将是可接受的、有用的且可行的。这种干预措施共同设计模式可用于开发针对各种慢性病的医疗保健干预措施。