The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions

Abstract

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.

Multidrug‐resistant organisms in paediatric palliative care patients – Prevalence, risk factors and the impact of a liberal hygiene concept

“…All patients are screened for MDRO on admission. All children with positive MDRO screening results receive barrier nursing as described previously 10,13 …”

“…In this context, we developed and implemented a special hygiene concept to prevent MDRO transmission (called PALLINI) in our PPC unit. In PALLINI, strict barrier nursing 10 is applied to PPC patients colonised with MDRO instead of isolation. According to this concept affected patients and their families are allowed to participate in social activities (e.g.…”

“…Within the patient's room, no protective clothing is required for patients and their family members and doors can be left open. Staff members without direct patient contact do not need personal protective equipment while entering the patient's room, only during close contact with the patient personal protective equipment use is obligatory 10 . PALLINI further contains the assignment of all patients to risk groups (low risk, substantial risk) based on pre‐defined risk factors (e.g.…”

Teilhaben trotz multiresistenter Erreger (MRE)

“…Ist auf der Station viel Betrieb, wägen Pflegekräfte, aber auch Eltern, die Möglichkeiten der Teilhabe ab: Die Familien bleiben manchmal als Rücksichts-und Sicherheitsmaßnahme in ihren Zimmern, um eine Ansteckung anderer Kinder zu verhindern. Für manche Eltern ist auch das Tragen der Kittel mit stigmatisierenden Gefühlen verbunden [7], sodass auch dies ein Grund für sie sein kann, im Zimmer zu bleiben. Oder ein Patient leidet sichtlich unter der Schutzkleidung.…”

“…Die Eltern von Kindern mit Barrierepflege schätzen die Lebensqualität ihres Kindes auf der Station "Lichtblicke" genauso hoch ein wie die Eltern von Kindern ohne Barrierepflege [7].…”