Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease

Author:

Franklin Melanie K1,Karpyn Allison2,Christofferson Jennifer3,McWhorter Linda G1ORCID,C Demianczyk Abigail4,L Brosig Cheryl5,A Jackson Emily6,Lihn Stacey7,C Zyblewski Sinai8,E Kazak Anne39,Sood Erica3910ORCID

Affiliation:

1. Division of Behavioral Health, Department of Pediatrics, Nemours Children’s Health, Wilmington, DE, USA

2. Center for Research in Education and Social Policy, Department of Human Development and Family Sciences, University of Delaware, Newark, DE, USA

3. Center for Healthcare Delivery Science, Nemours Children’s Health, Wilmington, DE, USA

4. Department of Child and Adolescent Psychiatry and Behavioral Sciences & Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

5. Herma Heart Institute, Children’s Wisconsin and Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA

6. Department of Patient and Family Services, Nemours Children’s Health, Wilmington, DE, USA

7. Sisters by Heart, El Segundo, CA, USA

8. Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA

9. Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA

10. Nemours Cardiac Center, Nemours Children’s Health, Wilmington, DE, USA

Abstract

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child’s health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team’s scope of practice, (2) perceived expectation to “stay strong,” (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team’s ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

Funder

National Institute of General Medical Sciences

Agency for Healthcare Research and Quality

Publisher

SAGE Publications

Subject

Pediatrics,Pediatrics, Perinatology and Child Health

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