Background: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. Aim: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. Methods: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. Findings: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. Conclusion: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals’ assessment and following an official classification system such as the International Classification of Sleep Disorders (ICSD-3) exist. The ICSD-3 sleep disorders of inpatient children and adolescents with LLC and SNI (N = 70) were assessed by professionals using a recording sheet (two-year recruitment period). A systematic sleep protocol was applied to identify patients’ sleep characteristics. Of these patients, 45.6% had sleep disorders, with the majority of them experiencing two different ones. Overall, the most frequently identified disorders were Chronic Insomnia and Circadian Sleep–Wake Disorder. Patients experiencing Chronic Insomnia showed more sleep phases during the daytime and more waking phases at nighttime than those unaffected. Patients with and without a Circadian Sleep–Wake Disorder additionally differed in the length of sleep phases during the daytime. Rapid changes between wakefulness and sleep were specifically characteristic of Hypersomnia. The study provides important insights into the prevalence and characteristics of individual ICSD-3 sleep disorders in pediatric palliative care. The findings may contribute to a targeted and efficient diagnosis and therapy of distressing sleep problems in seriously ill patients.
Auf der pädiatrischen Palliativstation Lichtblicke geht es bunt zu: Kinder sitzen aufmerksam in ihren Rollstühlen im "Lebensraum" und malen mit Unterstützung einer Heilerziehungspflegerin oder einer Kunsttherapeutin große Bilder. Eltern tauschen sich aus und machen gemeinsam einen kleinen Spaziergang im Garten. Geschwisterkinder spielen im Sandkasten. In einem Patientenzimmer sprechen eine Ärztin, eine Psychologin und eine Pflegekraft mit einer Familie über die Zeit nach der Entlassung. Eine Pflegekraft übt in einem anderen Patientenzimmer im Beisein einer Auszubildenden mit einer Mutter das Absaugen bei ihrem Kind. Eine ehrenamtliche Mitarbeiterin liest einem Kind im Bett eine Geschichte vor, im Stationszimmer piept der Monitor, im Flur spielt die Musiktherapeutin Klavier, während eine Stationshilfe Schränke auffüllt. Bei geöffneter Tür hört man auf dem Flur ein Kind husten, der Vater sitzt daneben mit Tränen in den Augen, eine Pflegekraft schaut nach dem Kind und dem Vater: Miteinander lachen und weinen gehört auf Lichtblicke dazu. Alles in allem eine ganz normale Momentaufnahme einer pädiatrischen Palliativstation mit dem Blick auf das palliativmedizinische Ziel: Ermöglichung sozialer Teilhabe [1]. Die Station lebt neben aller Ernsthaftigkeit und der hochkompetenten medizinisch-pflegerischen Versorgung auch von den ungezwungenen Gesprächen und spontanen Kontakten zwischen den Mitarbeiterinnen und den Familien. Das Gebäude (▶ Abb. 1) unterstützt mit seiner gerundeten Bauweise Begegnung und Privatheit.
Aim Multidrug‐resistant organisms (MDRO) deserve special attention in health‐care facilities for children with life‐limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single‐room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk‐adaption and barrier nursing. Methods Two‐year surveillance with MDRO screening of all intakes (N = 386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre‐defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. Results The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2‐year period, no MDRO‐related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. Conclusion Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.
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