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Cardiol Young. 2018 Apr;28(4):561-570. doi: 10.1017/S1047951117002761. Epub 2018 Jan 10.

A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease.

Author information

1
1Department of Pediatrics,Division of Pediatric Cardiology,Ward Family Heart Center,Children's Mercy Kansas City,Missouri,United States of America.
2
2Department of Pediatrics,Palliative Care,University of Michigan,Ann Arbor,Michigan,United States of America.
3
3Department of Pediatrics,Division of Pediatric Cardiology,University of Michigan,Ann Arbor,Michigan,United States of America.
4
4Department of Pediatrics,School of Medicine,Divisions of Pediatric Cardiology and Critical Care Medicine,Washington University,St. Louis,Missouri,United States of America.
5
5Department of Internal Medicine,Division of Geriatric Medicine and Palliative Care,University of Michigan,Ann Arbor,Michigan,United States of America.

Abstract

Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76±8.46 versus 7.0±5.0 and 46.34±12.59 versus 29.8±6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.

KEYWORDS:

CHD; hypoplastic left heart syndrome; paediatric palliative care; parental stress

PMID:
29316996
DOI:
10.1017/S1047951117002761
[Indexed for MEDLINE]

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