Palliative Behandlung und Sterben auf einer Neugeborenen-Intensivstation

Der Verlust eines Neugeborenen stellt für die betroffenen Eltern ein tief greifendes Ereignis dar. Vor allem im europäischen bzw. deutschsprachigen Raum wird die Problematik klinisch, wissenschaftlich und gesellschaftlich erst in Ansätzen wahrgenommen und untersucht, eine Übertragung der Ergebnisse von im anglo-amerikanischen Sprachraum durchgeführten Untersuchungen ist aufgrund unterschiedlicher Rahmenbedingungen nur eingeschränkt möglich. Im Rahmen eines infausten Krankheitsverlaufs kann eine Therapiezieländerung zu palliativer Therapie eine Rolle spielen. Dieser Aspekt wurde insbesondere aus Sicht der Eltern noch zu wenig wissenschaftlich beleuchtet und deren Auswirkung auf die Trauerreaktion der Eltern erst in wenigen älteren Studien untersucht. Die Betreuung der Familien sowohl in der Zeit der Erwägung und Besprechung einer palliativen Behandlung, zum Zeitpunkt des Versterbens des Kindes als auch in der Trauerphase stellt behandelnde Ärzte und das Pflegepersonal vor große Anforderungen. Eine Analyse der lokalen Bedingungen für Familien, die von einem neonatalen Verlust betroffen sind, erscheint von großem Interesse, um die zukünftige Betreuung den Bedürfnissen anpassen und verbessern zu können. Die dieser Dissertationsschrift zugrunde liegende Studie zeigt auf, wie Eltern den Tod ihres Neugeborenen erleben und welche Faktoren dieses Erleben und die Trauerreaktion beeinflussen. Im Rahmen einer deskriptiven Kohortenstudie wurden die Eltern aller Neugebo-renen, die im 5-Jahres-Zeitraum zwischen dem 1. Januar 1999 und dem 31. Dezember 2003 auf der neonatologischen Intensivstation verstarben, um schriftliche sowie persönliche Studienteilnahme gebeten. Der 21-seitige Fragebogen enthielt 242 Fragen einschließlich der Perinatal Grief Scale (PGS, validiertes Messinstrument). Die halbstrukturierten Interviews wurden aufgezeichnet und transkribiert. Die quantitativ erhobenen Daten wurden mittels explorativer statistischer Vergleiche analysiert, wobei ausschließlich nonparametrische Verfahren zur Anwendung kamen. 50 Eltern zu 31 von insgesamt 48 verstorbenen Kindern beteiligten sich, davon 41 per Fragebogen und Interview, 9 nur schriftlich. Die mediane Interviewdauer betrug 2,6 Stunden. Die Trauerintensität (PGS-Score) sowie die Dauer der Trauerphase bei Eltern mit Entscheidung zum Abbruch intensivmedizinischer Maßnahmen wichen nicht signifikant von denjenigen anderer Eltern ab. Unterschiede bzw. Korrelationen (p < 0,05) der PGS (medianer PGS-Score) bestanden bezüglich Geschlecht (Mütter: 63; Väter: 59), dem Vorhandensein vorher geborener Kinder (mit bzw. ohne vorher geborene Kinder 65 bzw. 51), dem Vorhandensein nachher geborener Kinder (mit bzw. ohne nachher geborene Kinder 59 bzw. 66) sowie dem Zeitraum zwischen Tod des Kindes und Interview. Mütter äußerten häufiger, dass die Trauer Auswirkungen auf das soziale Umfeld gehabt habe (p < 0,03). 95% der Eltern mit Entscheidung zur Beendigung intensivmedizinischer Maßnahmen meinten, dass sie angemessen in die Entscheidung miteinbezogen wurden und 92% gaben an, diese Miteinbeziehung nicht zu bedauern. 85% hatten diesbezüglich keine Schuldgefühle. 45% der Eltern fühlten sich jedoch in dieser Situation überfordert. 17% der Mütter und 6% der Väter fühlten sich generell schuldig für den Tod ihres Kindes. 60% der Eltern waren anwesend, als ihr Kind verstarb. Das Zugegensein wurde von allen als positiv empfunden. 75% der nicht anwesenden Eltern hätten sich dies im Nachhinein anders gewünscht. Eltern, die keinen Körperkontakt zu ihrem Kind gewünscht hatten (42%), hätten sich diesen in 79% im Nachhinein gewünscht. Die Mehrzahl der Eltern (79%) empfand das Vorhandensein von Erinnerungsgegenständen an das verstorbene Kind als hilfreich in der Trauerphase. Der Wunsch nach einem Gesprächspartner war in den ersten sechs Monaten nach dem Tod des Kindes geringer als im darauf folgenden Zeitraum (Väter 42%; 56% sowie Mütter 68%; 73%). 83% der Mütter und 71% der Väter meinten, dass sich die Beziehung zu ihrem Partner seit dem Tod des Kindes verändert habe, wobei 83% angaben, dass sie das Ereignis einander näher gebracht habe. Die vorliegende Studie zeigt, dass die Befragung trauernder Eltern möglich ist. Die Bereitschaft betroffener Familien, an einer Untersuchung ihrer Situation teilzunehmen, war überraschend groß. Die stattgefundenen Gespräche wurden von den Eltern trotz der immanenten Belastung ausschließlich positiv beurteilt. Nach den vorgelegten Daten scheint eine Einbeziehung der Familie in den Prozess der Entscheidungsfindung zur Umorientierung des Therapieziels von Heilung auf Palliation bei schwerstkranken Früh- und Reifgeborenen keine ungünstigen Auswirkungen auf den Trauerverlauf, auf Schweregrad und Dauer elterlicher Schuldgefühle im Zusammenhang mit dem Verlust des Kindes oder auf die Häufigkeit pathologischer Trauerreaktionen zu haben. Die individuellen Bedürfnisse der Eltern hinsichtlich der verschiedenen Möglichkeiten des Kontakts zu ihrem sterbenden Neugeborenen sind nicht einheitlich. Auf das Anfertigen, Aushändigen bzw. Bewahren von Erinnerungsgegenständen sollte geachtet werden. Der perinatale Tod eines Zwillingskindes kann eine ebenso schwerwiegende Belastung der Familie auslösen wie der Tod eines Einlingskindes. Der Verlust der inneren Stabilität der Familie bei Tod eines Neugeborenen beeinträchtigt Geschwisterkinder in unterschiedlichem Ausmaß und verursacht auch bei ihnen spezielle Betreuungsbedürfnisse. Wenige Wochen nach einem perinatalen Todesfall sollten den Eltern seitens des medizinischen Betreuungspersonals ein oder mehrere Nachgespräche angeboten werden. Dabei sollte auf zu erwartende Unterschiede zwischen der mütterlichen und väterlichen Trauerreaktion hingewiesen werden. Auf das Risiko pathologischer oder chronischer Trauerreaktionen sollte ebenfalls verwiesen werden, da sie einer professionellen Betreuung bedürfen. Abschließend kann festgehalten werden, dass keine Handlungsrichtlinien kreiert werden können, die die Bedürfnisse aller betroffenen Eltern erfassen. Die Betreuung der Eltern muss vielmehr anstreben, diese auf ihrem individuellen Weg emotional zu begleiten, Verständnis für die gezeigten Reaktionen aufzubringen und individuell geeignete Hilfsangebote zur Verfügung zu stellen

A randomised controlled trial of a family-group cognitive-behavioural (FGCB) preventive intervention for the children of parents with depression: short-term effects on symptoms and possible mechanisms

OBJECTIVE Parental depression is one of the biggest risk factors for youth depression. This parallel randomized controlled trial evaluates the effectiveness of the German version of the family-group-cognitive-behavioral (FGCB) preventive intervention for children of depressed parents. METHODS Families with (i) a parent who has experienced depression and (ii) a healthy child aged 8-17~years (mean = 11.63; 53% female) were randomly allocated (blockwise; stratified by child age and parental depression) to the 12-session intervention (EG; n = 50) or no intervention (CG; usual care; n = 50). Self-reported (unblinded) outcomes were assessed immediately after the intervention (6~months). We hypothesized that CG children would show a greater increase in self-reported symptoms of depression (DIKJ) and internalising/externalising disorder (YSR/CBCL) over time compared to the EG. Intervention effects on secondary outcome variables emotion regulation (FEEL-KJ), attributional style (ASF-KJ), knowledge of depression and parenting style (ESI) were also expected. Study protocol (Belinda Platt, Pietsch, Krick, Oort, & Schulte-Körne, 2014) and trial registration (NCT02115880) reported elsewhere. RESULTS We found significant intervention effects on self-reported internalising (Formula: see text = 0.05) and externalising (Formula: see text = 0.08) symptoms but did not detect depressive symptoms or parent-reported psychopathology. Parental depression severity did not modify these effects. Both groups showed equally improved knowledge of depression (Formula: see text = 0.06). There were no intervention effects on emotion regulation, attributional style or parenting style. CONCLUSION The German version of the FGCB intervention is effective in reducing symptoms of general psychopathology. There was no evidence that the mechanisms targeted in the intervention changed within the intervention period

Qualitative evaluation of a preventive intervention for the offspring of parents with a history of depression

Background: Meta-analyses of randomised controlled trials suggest that psychological interventions to reduce children’s risk of depression are effective. Nevertheless, these effects are modest and diminish over time. The Medical Research Council recommends a mixed-methods approach to the evaluation of complex interventions. By gaining a more thorough understanding of participants’ perspectives, qualitative evaluations of preventive interventions could improve their efficacy, longevity and transfer into clinical practice. Methods: 18 parents and 22 children who had received a 12-session family- and group-based cognitivebehavioural intervention to prevent youth depression as part of a randomised controlled trial took part in semistructured interviews or a focus group about aspects which had been perceived as helpful, elements they were still using after the intervention had ended, and suggestions they had for improving the intervention. Results: The chance to openly share and discuss their experiences of depression within and between families was considered helpful by both children and parents. Children benefitted the most from learning coping strategies for dealing with stress and many still used them in everyday life. Parents profited mostly from increasing positive family time, but noted that maintaining new routines after the end of the intervention proved difficult. Participants were generally content with the intervention but commented on how tiring and time consuming it was. Conclusions: Managing parents’ expectations of family-based interventions in terms of their own mental health needs (versus those of their children) and leaving more room for open discussions may result in interventions which are more appealing to participating families. Increasing intervals between sessions may be one means of improving the longevity of interventions. Trial registration: The original RCT this evaluation is a part of was registered under NCT02115880

A Qualitative Study to Explain the Factors Influencing Mental Health after a Flooding

Background: Children and adolescents are considered to be particularly vulnerable to the psychological effects of climate change, such as extreme weather events. What are the protective factors and stressors for the mental health of the young population after extreme weather events in Germany? Methods: Nine semi-structured interviews with representatives of occupational groups providing care to children, adolescents, and political stakeholders were conducted in Simbach am Inn, a German town affected by flooding in 2016. The interviews were analyzed using qualitative content analysis according to Mayring. Results: The interviews show that the parents’ dealing with what they had experienced and the concern for their relatives were the most influential stressors for children and adolescents. As protective factors, they felt that conversations with familiar people and restoring a certain “normality” were particularly important. The interviewees described both, the time of the flooding, and the time after the initial state of shock had subsided, as particularly stressful. Consequently, the experts reported on children and adolescents acutely complaining of fear, helplessness, and extreme tension. Nevertheless, the demand for psychological care increased only slightly after the flooding in Simbach am Inn. Conclusion: The social environment of children and adolescents is essential for their psychological well-being after an extreme weather event. Research, especially on children and adolescents who have already been affected, must increase in order to be able to describe influencing factors even more precisely, to protect individuals from adverse mental health effects, and to identify healthcare requirements

The NERSH International Collaboration on Values, Spirituality and Religion in Medicine: Development of Questionnaire, Description of Data Pool, and Overview of Pool Publications

Modern healthcare research has only in recent years investigated the impact of health care workers' religious and other moral values on medical practice, interaction with patients, and ethically complex decision-making. Thus far, no international data exist on the way such values vary across different countries. We therefore established the NERSH International Collaboration on Values in Medicine with datasets on physician religious characteristics and values based on the same survey instrument. The present article provides (a) an overview of the development of the original and optimized survey instruments, (b) an overview of the content of the NERSH data pool at this stage and (c) a brief review of insights gained from articles published with the questionnaire. The questionnaire was developed in 2002, after extensive pretesting in the United States and subsequently translated from English into other languages using forward-backward translations with Face Validations. In 2013, representatives of several national research groups came together and worked at optimizing the survey instrument for future use on the basis of the existing datasets. Research groups were identified through personal contacts with researchers requesting to use the instrument, as well as through two literature searches. Data were assembled in Stata and synchronized for their comparability using a matched intersection design based on the items in the original questionnaire. With a few optimizations and added modules appropriate for cultures more secular than that of the United States, the survey instrument holds promise as a tool for future comparative analyses. The pool at this stage consists of data from eleven studies conducted by research teams in nine different countries over six continents with responses from more than 6000 health professionals. Inspection of data between groups suggests large differences in religious and other moral values across nations and cultures, and that these values account for differences in health professional's clinical practices

A randomized controlled trial of a preventive intervention for the children of parents with depression: mid-term effects, mediators and moderators

Abstract Background In a parallel randomized controlled trial the effectiveness of the family- and group-based cognitive-behavioural “Gug-Auf” intervention in preventing depression in children of depressed parents was evaluated. We hypothesized that the intervention would be associated with reduced incidence of depression at 15 months as well as with reduced symptom severity at 6, 9, and 15 months. We also explored the role of a number of mediators and moderators. Methods Families were included if a parent (n = 100, mean age = 46.06, 61% female) had experienced depression and children (n = 135, aged 8–17 years, 53% female) had no mental illness. Families (91.5% German) were randomly allocated (50:50 block-wise; stratified by child age and parental depression) to the 12-session “GuG-Auf” intervention or no intervention. Outcomes were assessed (on an intention-to-treat basis) at 0-(T1), 6-(T2), 9-(T3) and 15-months (T4) after baseline. Primary outcome (onset of depression; T4) was assessed with standardized (blinded) clinical interviews. Secondary (unblinded) outcome was risk of depression (at T2-T4) indicated by self- and parent-reported symptoms of internalizing, externalizing and depressive disorder. Potential mediators were emotion regulation, attributional style, knowledge of depression and parenting style. Potential moderators were parental depression severity and negative life events. Results None of the children who received the intervention developed depression, whereas two of those in the control group did. The intervention significantly reduced depression risk (indicated by severity of self-reported internalizing symptoms) at T3 (p = .027, d = -0.45) and T4 (p = .035, d = -0.44). Both groups showed reduced depressive symptoms (p = .029, d = -0.44). Cognitive problem-solving and negative parenting emerged as mediators. There was no evidence that the intervention was associated with parent-reported internalizing symptoms or externalizing symptoms. No adverse events were observed. Conclusions Children of parents with depression showed an increase in self-reported (but not parent-reported) internalizing symptoms over time. This increase was not present in children who received the GuG-Auf intervention. The intervention was not associated with changes in externalizing symptoms. Conclusions regarding prevention of the onset of depression were not possible. Despite some limitations in the generalizability, these findings contribute to reducing the burden of youth depression. Registration The trial was registered on 16/04/2014 at ClinicalTrials.gov ( NCT02115880 ) and study protocol published in BMC Psychiatry ( https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-014-0263-2 )

Reduced Cancer Incidence in Huntington's Disease: Analysis in the Registry Study

Background: People with Huntington's disease (HD) have been observed to have lower rates of cancers. Objective: To investigate the relationship between age of onset of HD, CAG repeat length, and cancer diagnosis. Methods: Data were obtained from the European Huntington's disease network REGISTRY study for 6540 subjects. Population cancer incidence was ascertained from the GLOBOCAN database to obtain standardised incidence ratios of cancers in the REGISTRY subjects. Results: 173/6528 HD REGISTRY subjects had had a cancer diagnosis. The age-standardised incidence rate of all cancers in the REGISTRY HD population was 0.26 (CI 0.22-0.30). Individual cancers showed a lower age-standardised incidence rate compared with the control population with prostate and colorectal cancers showing the lowest rates. There was no effect of CAG length on the likelihood of cancer, but a cancer diagnosis within the last year was associated with a greatly increased rate of HD onset (Hazard Ratio 18.94, p < 0.001). Conclusions: Cancer is less common than expected in the HD population, confirming previous reports. However, this does not appear to be related to CAG length in HTT. A recent diagnosis of cancer increases the risk of HD onset at any age, likely due to increased investigation following a cancer diagnosis

Clinical and genetic characteristics of late-onset Huntington's disease

Background: The frequency of late-onset Huntington's disease (&gt;59 years) is assumed to be low and the clinical course milder. However, previous literature on late-onset disease is scarce and inconclusive. Objective: Our aim is to study clinical characteristics of late-onset compared to common-onset HD patients in a large cohort of HD patients from the Registry database. Methods: Participants with late- and common-onset (30–50 years)were compared for first clinical symptoms, disease progression, CAG repeat size and family history. Participants with a missing CAG repeat size, a repeat size of ≤35 or a UHDRS motor score of ≤5 were excluded. Results: Of 6007 eligible participants, 687 had late-onset (11.4%) and 3216 (53.5%) common-onset HD. Late-onset (n = 577) had significantly more gait and balance problems as first symptom compared to common-onset (n = 2408) (P &lt;.001). Overall motor and cognitive performance (P &lt;.001) were worse, however only disease motor progression was slower (coefficient, −0.58; SE 0.16; P &lt;.001) compared to the common-onset group. Repeat size was significantly lower in the late-onset (n = 40.8; SD 1.6) compared to common-onset (n = 44.4; SD 2.8) (P &lt;.001). Fewer late-onset patients (n = 451) had a positive family history compared to common-onset (n = 2940) (P &lt;.001). Conclusions: Late-onset patients present more frequently with gait and balance problems as first symptom, and disease progression is not milder compared to common-onset HD patients apart from motor progression. The family history is likely to be negative, which might make diagnosing HD more difficult in this population. However, the balance and gait problems might be helpful in diagnosing HD in elderly patients