Advertisement
Canadian Journal of Cardiology

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
      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.
      ,
      • Green A.
      • Meaux J.
      • Huett A.
      • Ainley K.
      Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant.
      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.
      ,
      • 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.
      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.
      ,
      • 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.
      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.
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Canadian Journal of Cardiology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • 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
        • 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
        • 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
        • 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