International journal of nursing studies
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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. ⋯ 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.