The Psychosocial Impact on Families of Paediatric LT-MCS Patients During In- Hospital Bridge to Transplant: A Modified Systematic Review

Abstract

Introduction: End-stage heart failure children waiting for heart transplants have better survival rates with long-term mechanical circulatory support (LT-MCS). However, the shortage of donor hearts prolongs the transplant bridging period, extending hospitalisation, disrupting family life, and adding uncertainty. While a previous mixed-method systematic review has explored the home experience of these families, understanding their in-hospital experiences remains limited. Therefore, this review aims to examine the psychosocial impact on these families during their LT-MCS children’s in-hospital bridged to transplant, illuminating their challenges and resilience. Methods: This review employed the SPIDER framework searching for PubMed, CINAHL, ASSIA, Embase, and ProQuest (dissertations and theses) for English-published and non-published qualitative studies according to the pre-defined inclusion criteria. Findings: Six qualitative studies matched the pre-defined inclusion criteria. The review synthesised four themes using Braun and Clarke reflexive thematic analysis: (1) Commencing the families' journey with LT-MCS discussing the diagnosis and LT-MCS implantation’s impact. (2) Navigating the LT-MCS paediatric patients’ families through Bridging: addressing LT-MCS children-mother role changes, caregiver's daily life, complications, and grief. (3) Crossroads of blessings and challenges: LT-MCS children's families await a new heart, highlighting donor heart uncertainty. (4) The power stations of LT-MCS children’s families focus on supporting systems. After synthesising themes, findings were examined through Dr. Mishel’s Uncertainty in Illness Theory, Theor yielding recommendations aligned with Advanced Nursing Practice's pillars. Conclusion: This systematic review highlights the profound psychosocial impact and uncertain experience on LT-MCS children’s families during diagnosis, hospitalisation, complications, grieving, and the waiting period for a new heart. It calls for urgent tailored educational and supportive interventions by clinicians for sudden and previously diagnosed heart failure children's families, robust policy initiatives, and innovative research. Additionally, it points out the role and potential needs of healthcare providers in helping families mitigate the stresses associated with the in-hospital bridging period.