Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports

被引:0
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作者
Marshall, Emily [1 ,2 ]
Gramszlo, Colette [1 ]
Perez Ramirez, Alejandra [3 ]
Kazak, Anne E. [2 ,3 ]
Shillingford, Amanda J. [4 ]
Ortinau, Cynthia M. [5 ]
Kelly, Sarah L. [6 ,7 ]
Kasparian, Nadine [8 ,9 ,10 ]
Edwards, Lindsay A. [11 ,17 ]
Divanovic, Allison A. [10 ,12 ]
Davis, Jo Ann [13 ]
Butler, Samantha C. [14 ]
Braley, Katherine [15 ]
Riegel, Erin [16 ]
Sood, Erica [1 ,2 ,3 ]
机构
[1] Nemours Childrens Hosp Delaware, Nemours Cardiac Ctr, Wilmington, DE 19803 USA
[2] Thomas Jefferson Univ, Sidney Kimmel Med Coll, Philadelphia, PA 19107 USA
[3] Nemours Childrens Hosp Delaware, Nemours Ctr Healthcare Delivery Sci, Wilmington, DE USA
[4] Childrens Hosp Philadelphia, Cardiac Ctr, Philadelphia, PA USA
[5] Washington Univ, Dept Pediat, St Louis, MO USA
[6] Univ Colorado, Sch Med, Dept Pediat, Aurora, CO USA
[7] Univ Colorado, Sch Med, Dept Psychiat, Aurora, CO USA
[8] Cincinnati Childrens Hosp Med Ctr, Heart & Mind Wellbeing Ctr, Heart Inst, Cincinnati, OH USA
[9] Cincinnati Childrens Hosp Med Ctr, Div Behav Med & Clin Psychol, Cincinnati, OH USA
[10] Univ Cincinnati, Coll Med, Dept Pediat, Cincinnati, OH USA
[11] Seattle Childrens Hosp, Seattle, WA USA
[12] Cincinnati Childrens Hosp Med Ctr, Heart Inst, Cincinnati, OH USA
[13] Nationwide Childrens Hosp, Dept Pediat, Columbus, OH USA
[14] Harvard Med Sch, Boston Childrens Hosp, Dept Psychiat & Behav Sci, Boston, MA USA
[15] Nemours Childrens Hosp Florida, Nemours Cardiac Ctr, Orlando, FL USA
[16] Parent Res Partner, Wilmington, DE USA
[17] Duke Univ, Med Ctr, Durham, NC USA
基金
美国医疗保健研究与质量局;
关键词
PERSON-CENTERED CARE; PREVALENCE; CHILDREN; PARENTS; HEALTH;
D O I
10.1038/s41372-025-02250-z
中图分类号
R71 [妇产科学];
学科分类号
100211 ;
摘要
ObjectiveTo identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress.MethodParents of children diagnosed prenatally with CHD (N = 37) were purposively sampled across eight health systems. Qualitative data were collected using crowdsourcing methods and coded/analyzed using thematic analysis.ResultsSocial stressors increasing distress after prenatal diagnosis were widely endorsed: (1) feelings of loneliness (most common: 68%), (2) well-meaning yet unhelpful comments, (3) loss of celebration of pregnancy, (4) information overload, and (5) untimely/insensitive discussions surrounding pregnancy termination. Social supports included: (1) emotional support and small acts of kindness, (2) hope/connection through the experiences of others, (3) informational support, (4) nurturing normalcy and the joy of pregnancy, and (5) connection through religion/spirituality.ConclusionInterpersonal relationships are vital for coping with prenatal diagnosis. Interventions to reduce distress after prenatal diagnosis should attend to common social stressors.
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页数:7
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