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Training/Practice Contemporary Issues in Cardiology Practice| Volume 38, ISSUE 7, P1121-1124, July 01, 2022

Parental Health-Related Quality of Life and Family Functioning Following Pediatric Heart Transplantation

Published:February 28, 2022DOI:https://doi.org/10.1016/j.cjca.2022.02.024
Parental Health-Related Quality of Life and Family Functioning Following Pediatric Heart Transplantation
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      Pediatric heart transplantation is a life-saving treatment, yet is associated with life-long medical follow-up, including regular clinic visits, frequent blood work, invasive procedures, and a strict regimen of immunosuppressive therapy.
      • Kim J.J.
      • Marks S.D.
      Long-term outcomes of children after solid organ transplantation.
      Clinics. 2014; 69: 28-38
      ,
      • Green A.
      • Meaux J.
      • Huett A.
      • Ainley K.
      Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant.
      Prog Transplant. 2009; 19: 122-127
      For parents of heart transplant recipients, the burden of complex care can disrupt family roles and routines, as well as exacerbate existing family stress, especially given the uncertainty of treatment outcomes.
      • Green A.
      • Meaux J.
      • Huett A.
      • Ainley K.
      Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant.
      Prog Transplant. 2009; 19: 122-127
      ,
      • Cousino M.K.
      • Rea K.E.
      • Schumacher K.R.
      • Magee J.C.
      • Fredericks E.M.
      A systematic review of parent and family functioning in pediatric solid organ transplant populations.
      Pediatr Transplant. 2017; 21e12900
      Studies focusing on the acute and long-term effects of pediatric solid organ transplantation report elevated levels of family stress and mental health symptoms among parents of recipients.
      • Green A.
      • Meaux J.
      • Huett A.
      • Ainley K.
      Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant.
      Prog Transplant. 2009; 19: 122-127
      ,
      • Cousino M.K.
      • Rea K.E.
      • Schumacher K.R.
      • Magee J.C.
      • Fredericks E.M.
      A systematic review of parent and family functioning in pediatric solid organ transplant populations.
      Pediatr Transplant. 2017; 21e12900
      This is concerning because poor parental HRQOL and family functioning can negatively affect the child’s transplant prognosis.
      • Cousino M.K.
      • Rea K.E.
      • Schumacher K.R.
      • Magee J.C.
      • Fredericks E.M.
      A systematic review of parent and family functioning in pediatric solid organ transplant populations.
      Pediatr Transplant. 2017; 21e12900
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      References

        • Kim J.J.
        • Marks S.D.
        Long-term outcomes of children after solid organ transplantation.
        Clinics. 2014; 69: 28-38
        View in Article
        • Green A.
        • Meaux J.
        • Huett A.
        • Ainley K.
        Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant.
        Prog Transplant. 2009; 19: 122-127
        View in Article
        • Cousino M.K.
        • Rea K.E.
        • Schumacher K.R.
        • Magee J.C.
        • Fredericks E.M.
        A systematic review of parent and family functioning in pediatric solid organ transplant populations.
        Pediatr Transplant. 2017; 21e12900
        View in Article
        • Varni J.W.
        • Sherman S.A.
        • Burwinkle T.M.
        • Dickinson P.E.
        • Dixon P.
        The PedsQL Family Impact Module: preliminary reliability and validity.
        Health Qual Life Outcomes. 2004; 2: 55
        View in Article
        • Lerret S.M.
        • Weiss M.E.
        How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant.
        Pediatr Transplant. 2011; 15: 606-616
        View in Article

      Article Info

      Publication History

      Published online: February 28, 2022
      Accepted: February 22, 2022
      Received: December 9, 2021

      Footnotes

      See page 1123 for disclosure information.

      Identification

      DOI: https://doi.org/10.1016/j.cjca.2022.02.024

      Copyright

      © 2022 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.

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