To study the caregivers' perception of their own well-being 1 year after subthalamic deep brain stimulation (STN-DBS) surgery in Parkinson's disease (PD) patients, using a qualitative and quantitative approach. 25 patients and caregivers, living together in partnerships, were examined before and at 3-month and 1-year follow-up (FU) after STN-DBS surgery. Semi-structured FU interviews concerning caregivers' own well-being under STN-DBS were conducted and analyzed: caregivers were accordingly assigned to positive or negative outcome groups. Quality of life (QoL), depression, apathy and anxiety of caregivers and patients were measured. These quantitative data were compared to the 1-year FU interview outcomes. Multiple comparisons analyzed caregiver group assignments based on these measurements. Logistic regression was used to find predictors. Additionally, patients' mood ratings were used in multiple comparisons with caregivers' subjective outcome, to analyze the interaction of patient and caregiver ratings. At 3-month FU, caregivers were more indecisive concerning their own well-being than at 1-year FU. At 1-year FU, caregivers from the negative group had greater depression, anxiety and lower QoL ratings. They were significantly older compared to the positive group. Patients' depression showed significantly stronger improvement in the positive outcome group. Patients' apathy and depression ratings were significant covariates of caregivers' QoL. Our results show that at 1-year FU over 50 % of the caregivers rated their subjective well-being as negative. Especially older and more depressed caregivers are at risk. These caregivers and their partners should be monitored more closely to identify possible problems and help them adapt following surgery.
Our results show that a high proportion of PD patients and caregivers perceived personality changes under STN-DBS, emphasizing the relevance of this topic. Mood changed in positive and negative directions. Standard measurement scales failed to adequately reflect personality or mood changes subjectively perceived by patients. A more individualized preoperative screening and preparation for patients and caregivers, as well as postoperative support, could therefore be useful.
ZusammenfassungIn der Ergänzung des Nationalen Pandemieplans zur Bewältigung der COVID-19-Pandemie ist festgelegt, dass die Bundeszentrale für gesundheitliche Aufklärung (BZgA) über die Internetseite www.infektionsschutz.de Informationsmaterial zum Coronavirus SARS-CoV‑2 für die Allgemeinbevölkerung zur Verfügung stellt. Dieses soll insbesondere Antworten auf häufig gestellte Fragen (FAQ) sowie Verhaltensempfehlungen zur Prävention beinhalten.Dieser Artikel beschreibt, wie die Ad-hoc-Erstellung von Informationsinhalten in Form von FAQ erfolgt und welche Bedeutung diese in der Krisenkommunikation haben. Dabei wird der Wandel der FAQ vom einfachen Informationsangebot zum interinstitutionellen Krisenreaktionsinstrument (Rapid Reaction Tool) im Rahmen einer agilen Kommunikation zum Coronavirus deutlich. Im Sinne einer kongruenten und tagesaktuellen Informationsbereitstellung ist eine enge Zusammenarbeit zwischen den Institutionen erforderlich. Die Arbeits- und Abstimmungsprozesse sowie verschiedene Vorgehensweisen bei der Aktualisierung werden vorgestellt.Aus den beschriebenen und bewerteten Arbeitsprozessen können theoretische Implikationen für die Krisenkommunikation und das Krisenmanagement – insbesondere die Zusammenarbeit zwischen verschiedenen Institutionen – abgeleitet werden. Auch können sie von anderen Institutionen als Beispiel für „gute Praxis“ aufgegriffen und ggf. weiterentwickelt und auf andere Kontexte übertragen werden.
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