TY - JOUR
T1 - Parent mental health and family functioning following diagnosis of CHD
T2 - A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative
AU - Sood, Erica
AU - Lisanti, Amy Jo
AU - Woolf-King, Sarah E.
AU - Wray, Jo
AU - Kasparian, Nadine
AU - Jackson, Emily
AU - Gregory, Mary R.
AU - Lopez, Keila N.
AU - Marino, Bradley S.
AU - Neely, Trent
AU - Randall, Amy
AU - Zyblewski, Sinai C.
AU - Brosig, Cheryl L.
N1 - Funding Information:
This work was supported by the National Heart, Lung, and Blood Institute (grant number 1R13HL142298-01).
Funding Information:
The November, 2020 issue of Cardiology in the Young contains the inaugural five manuscripts from the Cardiac Neurodevelopmental Outcome Collaborative marking the beginning of the partnership between the Cardiac Neurodevelopmental Outcome Collaborative and Cardiology in the Young. In this issue of Cardiology in the Young, this article is part of the first set of three papers from the Cardiac Neurodevelopmental Outcome Collaborative R13 grant funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, which defines the research agenda for the next decade across seven domains of cardiac neurodevelopmental and psychosocial outcomes research: – –
Funding Information:
The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative is comprised of multidisciplinary topic area experts (in psychology, cardiology, nursing, social work) from three continents (North America, Europe, Australia), a health disparities expert, and parent stakeholders (Table ). This working group is one of the seven formed by the Cardiac Neurodevelopmental Outcome Collaborative in 2018 to identify significant gaps in knowledge and critical questions that must be answered to advance neurodevelopmental care and outcomes. The effort was supported by a National Heart, Lung, and Blood Institute R13 grant awarded to the Cardiac Neurodevelopmental Outcome Collaborative in collaboration with the Ann & Robert H. Lurie Children’s Hospital of Chicago, which funded a 2-day meeting of multidisciplinary, multinational experts, and patient/caregiver stakeholders in Kansas City, Missouri. The specific goals of the Parent Mental Health and Family Functioning Working Group were to identify: (1) significant knowledge gaps related to parent mental health and family functioning within the context of CHD; (2) critical questions that must be answered to further knowledge, policy, care, and outcomes; and (3) investigations needed to answer these critical questions. Although parents and families of children with complex forms of CHD requiring cardiac surgery during infancy were the primary focus of the working group, recommendations may also apply to parents/families of children with milder forms of CHD, as objective illness severity does not consistently predict mental health outcomes. The term “parent” in this context broadly refers to all primary caregivers including biological and adoptive and long-term foster parents, and other adults serving in a primary caregiving role. The term “family” includes both nuclear and extended family members. This paper presents the top five critical questions identified by the working group (Table ) and provides specific recommendations for science and health policy to inform the next decade of research on parent mental health and family functioning in CHD. ,
Publisher Copyright:
© The Author(s), 2021. Published by Cambridge University Press.
PY - 2021/6
Y1 - 2021/6
N2 - Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.
AB - Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.
KW - Congenital heart disease
KW - Family
KW - Mental health
KW - Neurodevelopmental
KW - Psychosocial
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U2 - 10.1017/S1047951121002134
DO - 10.1017/S1047951121002134
M3 - Article
C2 - 34082841
AN - SCOPUS:85107865754
SN - 1047-9511
VL - 31
SP - 900
EP - 914
JO - Cardiology in the Young
JF - Cardiology in the Young
IS - 6
ER -