ObjectiveTo review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs).DesignPubmed, EBSCO (Academic Search Complete, CINAHL and Medline) and Scopus were searched using the terms neonat*, infant*, pediatric*, prematur* or preterm AND (moral distress OR moral responsibility OR moral dilemma OR conscience OR ethical confrontation) AND intensive care.Results13 studies on moral distress published between January 1985 and March 2015 met our inclusion criteria. Fewer than half of those studies (6) were multidisciplinary, with a predominance of nursing staff responses across all studies. The most common themes identified were overly ‘burdensome’ and disproportionate use of technology perceived not to be in a patient's best interest, and powerlessness to act. Concepts of moral distress are expressed differently within nursing and medical literature. In nursing literature, nurses are often portrayed as victims, with physicians seen as the perpetrators instigating ‘aggressive care’. Within medical literature moral distress is described in terms of dilemmas or ethical confrontations.ConclusionsMoral distress affects the care of patients in the NICU and PICU. Empirical data on multidisciplinary populations remain sparse, with inconsistent definitions and predominantly small sample sizes limiting generalisability of studies. Longitudinal data reflecting the views of all stakeholders, including parents, are required.

Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.

Death in the NICU occurred differently within and between countries. Distinctive end-of-life decisions can be categorized separately by using a model with uniform definitions of withholding/withdrawing mechanical ventilation correlated with the patient's physiological condition. Cross-cultural comparison of end-of-life practice is feasible and important when comparing NICU outcomes.

An increasing number of days that apnea was recorded during hospitalization was associated with a worse outcome. Among the potential explanations for this finding is the possibility that multiple recurrent hypoxic and bradycardic spells may cause brain injury.

Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Using mixed methods, we asked parents about their prenatal experience, their hopes, the life of their affected child, and their family experience. 332 parents answered questions about 272 children; 128 experienced PND. These parents, despite feeling pressure to terminate (61%) and being told that their baby would likely die before birth (94%), chose to continue the pregnancy. Their reasons included: moral beliefs (68%), child-centered reasons (64%), religious beliefs (48%), parent-centered reasons (28%), and practical reasons (6%). At the time of the diagnosis, most of these parents (80%) hoped to meet their child alive. By the time of birth, 25% chose a plan of full interventions. A choice of interventions at birth was associated with fewer major anomalies (P < 0.05). Parents describe "Special" healthcare providers as those who gave balanced and personalized information, respected their choice, and provided support. Parents make decisions to continue a pregnancy and choose a plan of care for their child according to their beliefs and their child's specific medical condition, respectively. Insights from parents' perspective can better enable healthcare providers to counsel and support families.

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SLSJ-COX is clinically distinct, with acute fatal acidotic crises on a backdrop of chronic moderate developmental delay and hyperlactataemia. Leigh syndrome is common. Stroke-like episodes can occur. The Leigh syndrome of SLSJ-COX differs from that of SURF1-related COX deficiency. SLSJ-COX has a different spectrum of associated abnormalities, acidotic crises being particularly suggestive of LRPPRC related Leigh syndrome. Even among A354V homozygotes, pronounced differences in survival and severity occur, showing that other genetic and/or environmental factors can influence outcome.

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