A survey of moral distress in staff working in intensive care in the UK.

Elevated rates of burnout and post-traumatic stress have been found in staff working in critical care settings, but the aspect of moral distress has been harder to quantify until a recent revision of a scale previously designed for nurses, was adapted for use with a range of health professionals, including physicians. In this cross-sectional survey, n = 171 nurses and physicians working in intensive care in the United Kingdom completed the Moral Distress Scale-Revised in relation to their experiences at work. Mean (SD) Moral Distress Scale-Revised score was 70.2 (39.6). Significant associations were found with female gender (female 74.1 (40.2) vs. male 55.5 (33.8), p = 0.010); depression (r = 0.165, p = 0.035) and with intention to leave job (considering leaving 85.5 (42.4) vs. not considering leaving 67.2 (38.6), p = 0.040). These results highlight the importance of considering the moral impact of work-related issues when addressing staff wellbeing in critical care settings.

Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up.

The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff. Thirty-four mothers completed the Parental Stressor Scale:PICU, the General Health Questionnaire (GHQ-28) and the Impact of Event Scale, 8 months after discharge. In total 18/34 (53%) scored > or =5 on the GHQ-28 and 6/32 (18%) of the sample scored in the severe range (>35) on the Impact of Event Scale. Distress was associated with retrospective reports of stress experienced during admission (p < 0.001) but not with other demographic or medical variables. Mothers who talked about their feelings at the time of the admission had lower posttraumatic stress scores at 8 months (p = 0.02) and 25/34 (74%) mothers would have appreciated the offer of a follow up appointment. Screening for distress during admission with the Parental Stressor Scale:PICU may identify those mothers in greatest need of psychological support. Mothers' recollections of the Paediatric Intensive Care Unit: Associations with psychopathology and views on follow up.

Psychological management of two cases of self injury on the paediatric intensive care unit.

Self injury has not been previously reported in an intensive care setting. Two cases are presented of ventilator dependent children with high spinal cord lesions who exhibited an unusual form of self mutilation, namely lip biting. The key to extinguishing this behaviour was to address the children's psychological needs.

Sleep problems in children with Sanfilippo syndrome.

Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with Sanfilippo syndrome (mean age 10 years 2 months). The majority were found to have sleep problems (78%). Many also exhibited other distressing and unusual night time behaviours (staying up all night, chewing the bedclothes or crying out suddenly), and a few laughed or sang. Such problems may have been more severe in those with Sanfilippo syndrome type B. In four of the families offered individually tailored behaviour-management advice there was immediate improvement, which was maintained at followup in two cases. These results demonstrate the usefulness of even such a minimal intervention, even in a very difficult population such as this.

Early presentation in the mucopolysaccharide disorders.

The findings of an international questionnaire study of 258 children, affected by the four main subtypes of mucopolysaccharidosis, are presented. Questionnaires were completed by a parent or main carer and all subjects were alive at the time of contact and suffering from Hurler, Hunter, Sanfilippo or Morquio syndrome. A significant proportion of parents of Hurler children (24%) were unaware that anything was wrong with their baby before diagnosis but a larger number (45%) had felt concerned about their child's appearance. Similarly, in the case of the Morquio children, in 75% of cases, parents had been worried about some aspect of their child's physical appearance. In contrast, it was frequently delayed or regressing language which alerted parents of Sanfilippo (56%) and Hunter (32%) children, and this was associated with behaviour problems in 43% of Sanfilippo cases. There were many cases of delayed diagnosis, often occurring more than 2 years after concerns were first raised.

Behaviour in mucopolysaccharide disorders.

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular discussions with families at meetings of the Society for Mucopolysaccharide Diseases. High rates of behaviour problems were found, particularly in children with Sanfilippo's and Hunter's disease aged 5 to 9 years. These included destructiveness, restlessness, and aggressiveness. Sleep problems were common across subtypes with an overall prevalence of 66%. Parents reported that they received little or no support in the management of these difficult behaviours. It is concluded that behaviour problems are a primary feature of the mucopolysaccharide disorders and place a major strain on families. Services to help families cope with these problems are urgently needed.