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BMJ Case Reports 2017; doi:10.1136/bcr-2016-218351
  • CASE REPORT

Analysis of the psychosocial impact of caretaking on the parents of an infant with severe congenital heart defect

  1. Mark Justin Hylarides
  1. Medical School for International Health, Ben-Gurion University of the Negev, Be'er Sheva, Israel
  1. Correspondence to Jessica Lazar, jessica.lazar{at}mail.mcgill.ca
  • Accepted 7 February 2017
  • Published 16 March 2017

Summary

This case report considers the psychosocial burden of caring for an infant with a severe congenital heart defect (CHD) on parents. Improved prenatal diagnostics and postnatal surgical intervention have created a new and increasing demographic of children and adults with CHDs that require lifelong medical care. For this reason, primary caregivers spend excessive amounts of time in hospitals and medical facilities, and must regularly decipher vast amounts of unfamiliar medical terminology and concepts with varying levels of assistance from medical personnel. This often leads to marked psychological morbidities in parental caregivers, such as stress, anxiety and depression. The financial cost of caring for infants with CHD, including loss of employment opportunities, is another important factor that impacts the quality of life of caregivers. Frequent and extended travel to seek specialised medical care, often at distant medical centres, represents an additional burden.

Footnotes

  • Contributors JL and MJH contributed equally to this paper.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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