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.

Shared decision‐making in the paediatric field: a literature review and concept analysis

“…The strongest attribute identified in this analysis was the active participation of parents, children and health professionals. In most articles, SDM was expressed as active participation of more than one patient and professional in single or sequential medical encounters (). More than two participants interacted to reach consensus, and if one partner was unwilling or unable to participate, it was not regarded as SDM .…”

“…In most articles, SDM was expressed as active participation of more than one patient and professional in single or sequential medical encounters (). More than two participants interacted to reach consensus, and if one partner was unwilling or unable to participate, it was not regarded as SDM . Wyatt et al posited that SDM in the paediatric field is unique because of the challenges involving children, parents and health professionals.…”

“…The second attribute of SDM in paediatrics was collaborative partnership, which was defined as mutuality and equality between parents, children and health professionals (). According to the literature reviewed, open mindedness, mutual respect and trust were important components of this partnership .…”

“…Butler et al suggested that the SDM process included each individual's perception of their own expertise and respect for others. Health professionals’ guidance included their expertise in diagnosis, aetiology, prognosis, treatment options and outcome probability , while parents’ expertise included knowledge, experience with their children's illness and social circumstances . Acknowledging preferences, as well as understanding parents’ and children's experiences and values, played a role in SDM ().…”

“Watching time tick by…”: Decision making for Duchenne muscular dystrophy trials

“…This is consistent with prior research reflecting the influence of child’s illness severity and availability of treatment options on parents’ treatment decisions. [8, 9, 18]…”