Parental decision-making for medically complex infants and children: an integrated literature review

Abstract

Background: Many children with life-threatening conditions who would have died at birth are now surviving months to years longer than previously expected. Understanding how parents make decisions is necessary to prevent parental regret about decision-making, which can lead to psychological distress, decreased physical health, and decreased quality of life for the parents.

Objective: The aim of this integrated literature review was to describe possible factors that affect parental decision-making for medically complex children. The critical decisions included continuation or termination of a high-risk pregnancy, initiation of life-sustaining treatments such as resuscitation, complex cardiothoracic surgery, use of experimental treatments, end-of-life care, and limitation of care or withdrawal of support.

Design: PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO were searched using the combined key terms 'parents and decision-making' to obtain English language publications from 2000 to June 2013.

Results: The findings from each of the 31 articles retained were recorded. The strengths of the empirical research reviewed are that decisions about initiating life support and withdrawing life support have received significant attention. Researchers have explored how many different factors impact decision-making and have used multiple different research designs and data collection methods to explore the decision-making process. These initial studies lay the foundation for future research and have provided insight into parental decision-making during times of crisis.

Conclusions: Studies must begin to include both parents and providers so that researchers can evaluate how decisions are made for individual children with complex chronic conditions to understand the dynamics between parents and parent-provider relationships. The majority of studies focused on one homogenous diagnostic group of premature infants and children with complex congenital heart disease. Thus comparisons across other child illness categories cannot be made. Most studies also used cross-sectional and/or retrospective research designs, which led to researchers and clinicians having limited understanding of how factors change over time for parents.

Keywords: Decision-making; Infant; Integrated review; Neonate; Parent.