Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

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.

Background: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. Aim: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. Methods: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. Results: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. Conclusion: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.

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.