Essa tese aborda dois tópicos pouco explorados na literatura científica brasileira: a síndrome da morte súbita do lactente (SMSL) e o coleito. O objetivo principal foi avaliar o impacto de uma intervenção educativa individual para mães na maternidade, em relação ao posicionamento para dormir da criança. Secundariamente, verificou-se a prevalência de coleito e os fatores associados a esse arranjo para dormir. Realizou-se um ensaio clínico randomizado com 228 duplas de mães e seus filhos. A intervenção consistia em uma sessão individual de orientação na maternidade sobre a importância da posição supina para a criança dormir na prevenção da SMSL. O desfecho principal foi a posição de dormir da criança aos três e seis meses de idade, registrada durante visitas domiciliares. Regressão de Poisson foi utilizada para identificar os fatores associados ao coleito. Em relação ao posicionamento de dormir da criança, conforme relatado pela mãe. 42,9% das mães do grupo intervenção e 24,0% das mães do grupo controle colocavam seus filhos para dormir na posição supina na visita aos três meses (p= 0,009). A intervenção no hospital foi a única variável que influenciou as práticas maternas em relação à posição de dormir da criança (RC= 1,35; IC 95% = 1,08 - 1,64). A prevalência de coleito aos três e seis meses foi de, respectivamente, 31,2% e 28,5%. Aos três meses, o coleito estava associado a mãe sem companheiro (RP= 1,56; IC= 1,01-2,39) e a coabitação com a avó materna da criança (RP= 1,70; IC= 1,09-1,65). Concluindo, uma sessão educativa individual na maternidade aumentou significativamente a prevalência da posição supina para dormir no terceiro mês de vida da criança, mas não foi suficiente para garantir que a maioria das mães colocasse seus filhos para dormir nessa posição. Quanto ao coleito, ele se mostrou comum nos primeiros seis meses, estando associado à mãe sem companheiro e a coabitação com a avó materna da criança. / This study addresses two that issues have been little studied in the Brazilian scientific literature: sudden infant death syndrome (SIDS) and bedsharing. The main objective of this study was to evaluate the impact of an individual educational intervention given to mothers in the maternity ward regarding the infant sleep position. Secondarily we verified the prevalence of bedsharing and the variables associated to with this sleep arrangement. A randomized clinical trial was performed, in which 228 pairs of mothers-infants were included. The intervention consisted in an individual educational session for mothers in the maternity ward, concerning the recommendation of the supine position for infant sleep to prevent SIDS. The main outcome was the position in which the infant slept at night at three and six months, registered during home visits. The Poisson regression was applied to identify the factors associated with bedsharing. Regarding the infant sleep position, according to mothers' report, 42.9 percent of the mothers in the intervention group and 24.0 percent of the control group put their infants to sleep in the supine position at three months' visit (p= 0.009). The intervention in the hospital was the only variable that influenced maternal practices concerning the infant sleep position (OR= 1.33; CI 95% = 1.08 - 1.64). The prevalence of bedsharing at three and six months was, respectively, 31.2 and 28.5 percent. At three months bedsharing was associated to mother without partner (prevalence ratio [PR] 1.56; CI 1.01-2.39) and mother sharing the home with infant's maternal grandmother (PR= 1.70; CI= 1.09 - 1.65). We conclude that an individual educational session in the maternity ward significantly increased the prevalence of the infant's supine sleep position at three months. However, the intervention was not sufficient to assure the majority of the mothers would put their infants to sleep at this position. Bedsharing was common at the first six months of life and was associated with single mothers and sharing the home with infant's maternal grandmother.

Essa tese aborda dois tópicos pouco explorados na literatura científica brasileira: a síndrome da morte súbita do lactente (SMSL) e o coleito. O objetivo principal foi avaliar o impacto de uma intervenção educativa individual para mães na maternidade, em relação ao posicionamento para dormir da criança. Secundariamente, verificou-se a prevalência de coleito e os fatores associados a esse arranjo para dormir. Realizou-se um ensaio clínico randomizado com 228 duplas de mães e seus filhos. A intervenção consistia em uma sessão individual de orientação na maternidade sobre a importância da posição supina para a criança dormir na prevenção da SMSL. O desfecho principal foi a posição de dormir da criança aos três e seis meses de idade, registrada durante visitas domiciliares. Regressão de Poisson foi utilizada para identificar os fatores associados ao coleito. Em relação ao posicionamento de dormir da criança, conforme relatado pela mãe. 42,9% das mães do grupo intervenção e 24,0% das mães do grupo controle colocavam seus filhos para dormir na posição supina na visita aos três meses (p= 0,009). A intervenção no hospital foi a única variável que influenciou as práticas maternas em relação à posição de dormir da criança (RC= 1,35; IC 95% = 1,08 - 1,64). A prevalência de coleito aos três e seis meses foi de, respectivamente, 31,2% e 28,5%. Aos três meses, o coleito estava associado a mãe sem companheiro (RP= 1,56; IC= 1,01-2,39) e a coabitação com a avó materna da criança (RP= 1,70; IC= 1,09-1,65). Concluindo, uma sessão educativa individual na maternidade aumentou significativamente a prevalência da posição supina para dormir no terceiro mês de vida da criança, mas não foi suficiente para garantir que a maioria das mães colocasse seus filhos para dormir nessa posição. Quanto ao coleito, ele se mostrou comum nos primeiros seis meses, estando associado à mãe sem companheiro e a coabitação com a avó materna da criança. / This study addresses two that issues have been little studied in the Brazilian scientific literature: sudden infant death syndrome (SIDS) and bedsharing. The main objective of this study was to evaluate the impact of an individual educational intervention given to mothers in the maternity ward regarding the infant sleep position. Secondarily we verified the prevalence of bedsharing and the variables associated to with this sleep arrangement. A randomized clinical trial was performed, in which 228 pairs of mothers-infants were included. The intervention consisted in an individual educational session for mothers in the maternity ward, concerning the recommendation of the supine position for infant sleep to prevent SIDS. The main outcome was the position in which the infant slept at night at three and six months, registered during home visits. The Poisson regression was applied to identify the factors associated with bedsharing. Regarding the infant sleep position, according to mothers' report, 42.9 percent of the mothers in the intervention group and 24.0 percent of the control group put their infants to sleep in the supine position at three months' visit (p= 0.009). The intervention in the hospital was the only variable that influenced maternal practices concerning the infant sleep position (OR= 1.33; CI 95% = 1.08 - 1.64). The prevalence of bedsharing at three and six months was, respectively, 31.2 and 28.5 percent. At three months bedsharing was associated to mother without partner (prevalence ratio [PR] 1.56; CI 1.01-2.39) and mother sharing the home with infant's maternal grandmother (PR= 1.70; CI= 1.09 - 1.65). We conclude that an individual educational session in the maternity ward significantly increased the prevalence of the infant's supine sleep position at three months. However, the intervention was not sufficient to assure the majority of the mothers would put their infants to sleep at this position. Bedsharing was common at the first six months of life and was associated with single mothers and sharing the home with infant's maternal grandmother.

Essa tese aborda dois tópicos pouco explorados na literatura científica brasileira: a síndrome da morte súbita do lactente (SMSL) e o coleito. O objetivo principal foi avaliar o impacto de uma intervenção educativa individual para mães na maternidade, em relação ao posicionamento para dormir da criança. Secundariamente, verificou-se a prevalência de coleito e os fatores associados a esse arranjo para dormir. Realizou-se um ensaio clínico randomizado com 228 duplas de mães e seus filhos. A intervenção consistia em uma sessão individual de orientação na maternidade sobre a importância da posição supina para a criança dormir na prevenção da SMSL. O desfecho principal foi a posição de dormir da criança aos três e seis meses de idade, registrada durante visitas domiciliares. Regressão de Poisson foi utilizada para identificar os fatores associados ao coleito. Em relação ao posicionamento de dormir da criança, conforme relatado pela mãe. 42,9% das mães do grupo intervenção e 24,0% das mães do grupo controle colocavam seus filhos para dormir na posição supina na visita aos três meses (p= 0,009). A intervenção no hospital foi a única variável que influenciou as práticas maternas em relação à posição de dormir da criança (RC= 1,35; IC 95% = 1,08 - 1,64). A prevalência de coleito aos três e seis meses foi de, respectivamente, 31,2% e 28,5%. Aos três meses, o coleito estava associado a mãe sem companheiro (RP= 1,56; IC= 1,01-2,39) e a coabitação com a avó materna da criança (RP= 1,70; IC= 1,09-1,65). Concluindo, uma sessão educativa individual na maternidade aumentou significativamente a prevalência da posição supina para dormir no terceiro mês de vida da criança, mas não foi suficiente para garantir que a maioria das mães colocasse seus filhos para dormir nessa posição. Quanto ao coleito, ele se mostrou comum nos primeiros seis meses, estando associado à mãe sem companheiro e a coabitação com a avó materna da criança. / This study addresses two that issues have been little studied in the Brazilian scientific literature: sudden infant death syndrome (SIDS) and bedsharing. The main objective of this study was to evaluate the impact of an individual educational intervention given to mothers in the maternity ward regarding the infant sleep position. Secondarily we verified the prevalence of bedsharing and the variables associated to with this sleep arrangement. A randomized clinical trial was performed, in which 228 pairs of mothers-infants were included. The intervention consisted in an individual educational session for mothers in the maternity ward, concerning the recommendation of the supine position for infant sleep to prevent SIDS. The main outcome was the position in which the infant slept at night at three and six months, registered during home visits. The Poisson regression was applied to identify the factors associated with bedsharing. Regarding the infant sleep position, according to mothers' report, 42.9 percent of the mothers in the intervention group and 24.0 percent of the control group put their infants to sleep in the supine position at three months' visit (p= 0.009). The intervention in the hospital was the only variable that influenced maternal practices concerning the infant sleep position (OR= 1.33; CI 95% = 1.08 - 1.64). The prevalence of bedsharing at three and six months was, respectively, 31.2 and 28.5 percent. At three months bedsharing was associated to mother without partner (prevalence ratio [PR] 1.56; CI 1.01-2.39) and mother sharing the home with infant's maternal grandmother (PR= 1.70; CI= 1.09 - 1.65). We conclude that an individual educational session in the maternity ward significantly increased the prevalence of the infant's supine sleep position at three months. However, the intervention was not sufficient to assure the majority of the mothers would put their infants to sleep at this position. Bedsharing was common at the first six months of life and was associated with single mothers and sharing the home with infant's maternal grandmother.

Hintergrund: Ein Schwangerschaftsverlust beziehungsweise das Versterben des Säuglings kurz nach der Geburt stellt eine massive psychische Belastung für die betroffenen Eltern dar (Berth et al., 2009; Ellis et al., 2016). Durch die Trauer ausgelöste Folgeerkrankungen, wie beispielsweise Posttraumatische Belastungsstörungen, Angst- und Panikstörungen, somatoforme Störungen oder Depressionen, entwickeln sich bei 20 - 30 % der Eltern (Klapp, 2017). Die Verhaltensweisen und Handlungen der Klinikmitarbeitenden haben einen bedeutenden Einfluss auf die Eltern (Ellis et al., 2016). Die Verfügbarkeit einer empathischen geburtshilflichen Betreuung ist ein wichtiger Bestandteil für die psychische Gesundheit der Eltern sowie ein wichtiger Beitrag zur Prävention von Folgeerkrankungen (Mills et al., 2014). Die Hälfte aller betroffenen Familien wünscht sich unterstützende Strukturen und Systeme (Ellis et al., 2016). Bei einer Befragung der Betroffenen bezüglich der Qualität der Versorgung nach einem perinatalen Kindstod wurde belegt, dass über die Hälfte der Betroffenen mit der postpartalen Begleitung in der Klinik unzufrieden war (Meier Magistretti et al., 2019). 30 % der Eltern wünschen sich hilfreiche und umfangreiche Informationen für die Zeit nach dem Klinikaufenthalt, wie beispielsweise Kontaktdaten von Selbsthilfegruppen, 13 % wünschen sich, dass ihre Bedenken besprochen werden und 20 %, dass das öffentliche Bewusstsein für den perinatalen Kindstod gestärkt wird (Ellis et al., 2016). Ausgehend von der großen Bedeutung der Trauerverarbeitung nach einem perinatalen Verlust, bildet das Aufgabenmodell von Lammer (2014) die theoretische Grundlage dieser Studie. Das Modell beinhaltet Aspekte der klassischen Phasenmodelle, integriert die Aspekte des Aufgabenmodells von Worden und wird auf die Trauer nach dem perinatalen Kindstod übertragen (Lammer, 2014). Fragestellungen/Hypothesen: Die erste Forschungsfrage untersucht, ob es einen Zusammenhang zwischen der Klinikgröße und dem Angebot an Maßnahmen zur Trauerbewältigung für Eltern von Sternenkindern gibt. Die zweite Forschungsfrage untersucht den Zusammenhang zwischen einem umfangreichen Unterstützungsangebot für das Klinikpersonal im Umgang mit verwaisten Eltern und der Häufung an Informationsangeboten für trauernde Eltern. Bei beiden Fragen wird jeweils ein positiver Zusammenhang vermutet. Material und Methode: In dieser Arbeit wird mittels einer empirischen Studie die psychosoziale Betreuung rund um den perinatalen Verlust in Geburtskliniken untersucht. Ziel der vorliegenden Studie ist es, die aktuellen Vorgehensweisen der psychosozialen Betreuung in deutschen Kliniken zu erheben, um daraus Handlungsempfehlungen für Kliniken beziehungsweise Fachkräfte zum empathischen Umgang mit Betroffenen abzuleiten. Angewendet auf die Trauerbegleitung wurde ein konzeptionelles Modell entworfen, aus dem zwei Forschungsfragen generiert wurden, die mittels einer quantitativen Querschnittsstudie in Form einer Vollerhebung an deutschen Kliniken mit Entbindungsstation untersucht wurden. Das Sample umfasst Chefärzt*innen, geeignete Fachkräfte, Krankenpfleger*innen, Entbindungshelfer*innen, Seelsorger*innen, Psycholog*innen, Sozialarbeiter*innen und Angehörige unspezifischer Professionen. Das Datenerhebungsinstrument ist ein Fragebogen bestehend aus 5 Frageblöcken mit insgesamt 13 Fragen. Erhoben wurden die Daten mit der Software LimeSurvey (LimeSurvey GmbH). Die Auswertung der Daten zur Überprüfung der Hypothesen erfolgte mittels einer Regressionsanalyse. Ergebnisse: 206 (33.2 %) Klinken haben an der Befragung teilgenommen, am häufigsten Ärzt*innen (69.5 %) und Entbindungshelfer*innen (19 %). Die deskriptiven Ergebnisse zeigen, dass die Kliniken den Eltern unter anderem Verabschiedung (99.5 %), Kontaktaufnahme (95.1 %), Anfertigung von Erinnerungsstücken (98.5 %), Anfertigung von Fotos (99 %) und Kontaktaufnahme mit Sternenkindfotograf*innen (81.8 %) anbieten. Die Zufriedenheit des Klinikpersonals bei der psychosozialen Betreuung sowie dessen Relevanz wird sehr hoch eingeschätzt. Die Analysen bestätigen beide Hypothesen. Die Überprüfung der Hypothese 1: Je größer die Klinik ist, desto größer ist das Angebot an Maßnahmen zur Trauerbewältigung für Eltern von Sternenkindern zeigt, dass die Größe der Klinik einen höchst signifikant positiven Effekt auf die Anzahl der Angebote hat, um die Trauer der Eltern von Sternenkindern zu verarbeiten. Die Überprüfung der Hypothese 2: Je umfangreicher die Unterstützungsangebote für das Klinikpersonal im Umgang mit verwaisten Eltern ausfallen, desto größer ist das Informationsangebot für trauernde Eltern ergibt, dass sich die Anzahl unterschiedlicher Angebote für Krankenhauspersonal positiv und hoch signifikant auf die Anzahl der Informationsangebote für Eltern von Sternenkindern auswirkt. Das lineare Regressionsmodell mit der Erweiterung um die Anzahl der Geburten, die Anzahl der perinatalen Säuglingstodesfälle und die Situationsvariablen in Ost- oder Westdeutschland zeigt, dass die Anzahl der Angebote für das Krankenhauspersonal einen sehr positiven und signifikanten Einfluss auf die Anzahl der den Eltern zur Verfügung stehenden Informationen hat. Schlussfolgerungen: Eine mögliche Handlungsempfehlung, die sich aus dieser Studie ableiten lässt, ist, dem Klinikpersonal spezielle Fortbildungen rund um das Thema des perinatalen Kindstods anzubieten. Die Thematisierung von Ärzt*in-Patient*innen-Beziehung in Balint- oder Supervisionsgruppen können ebenfalls zu einer verbesserten Situation zwischen diesen führen, werden derzeit allerdings nur in 27 % der Kliniken angeboten. Um eine bessere psychosoziale Betreuung der trauernden Eltern zu etablieren, ist sowohl die interne interdisziplinäre Zusammenarbeit als auch die Kooperation mit externen Beratungsstellen förderlich. Darüber hinaus könnte es für die Eltern nach einem perinatalen Verlust wichtig sein, sich mit Gleichgesinnten auszutauschen, wobei bisher lediglich 40 % der Kliniken den Eltern den Hinweis auf Online-Selbsthilfegruppen geben.:Einleitung 1 1. Hintergrund 3 1.1 Begriffliche Bestimmung des perinatalen Kindstodes 3 1.2 Formale Regelungen zum Begriff des perinatalen Kindstodes 4 1.3 „Anhaltende Trauerstörung“ als Krankheitsbild 5 1.4 Trauer als Verlustreaktion und die daraus resultierenden Aufgaben der Trauerbewältigung 5 1.5 Unterstützung im Trauerprozess durch das Fachpersonal 9 1.5.1 Unterstützungsbedarfe der Betroffenen 9 1.5.2 Aufgaben der Trauerbegleitung 10 1.6 Psychosoziale Versorgungsstrukturen in der Geburtshilfe und Frauenheilkunde 16 1.6.1 Gynäkologische und neonatale Versorgungsstrukturen in Deutschland 16 1.6.2 Psychosoziale Betreuung im klinischen Kontext 19 2. Fragestellung und Hypothese 22 3. Material und Methode 27 3.1 Studienpopulation und Sample 27 3.2 Operationalisierung und Fragebogenentwicklung 33 3.3 Datenerhebungsmethode 38 3.4 Datenauswertungsmethoden 39 3.4.1 Quantitative Datenanalyse 39 3.4.2 Qualitative Inhaltsanalyse 41 3.5 Ethische und rechtliche Aspekte der Studie 42 4. Ergebnisse 43 4.1 Hypothese 1 43 4.1.1 Deskriptive Statistik zu Hypothese 1 43 4.1.2 Hypothesentest 44 4.2 Hypothese 2 46 4.2.1 Deskriptive Statistik zu Hypothese 2 47 4.2.2 Hypothesentest 49 4.3 Weitere explorative Datenanalysen 51 4.3.1 Angebote für betroffene Eltern 51 4.3.2 Bewertung der Zufriedenheit 52 4.3.3 Bewertung der Themenrelevanz 52 4.3.4 Standardisierte Vorgehensweise 53 4.3.5 Begriffe für Totgeburten und Kindstode in den Kliniken 54 4.3.6 Unerwähnte Angebote 55 4.3.7 Wünsche des Personals bezüglich der Unterstützung 56 4.3.8 Weitere Kommentare zur Begleitung der Eltern 57 5. Schlussfolgerungen 58 5.1 Zusammenfassung und Interpretation der Ergebnisse 58 5.2 Ergebniseinordnung in den aktuellen Forschungsstand und Handlungsempfehlungen 60 5.3 Kritische Reflexion der eigenen Untersuchung 64 5.4 Resümee und Zukunftsperspektiven 65 Zusammenfassung (Deutsch) 67 Abstract (English) 70 Quellenverzeichnis 73 Anhang 82 A. Abkürzungsverzeichnis 82 B. Abbildungsverzeichnis 83 C. Tabellenverzeichnis 84 D. Operationalisierung der Variablen 85 E. Fragebogen 88 F. Anschreiben Kliniken 96 G. Reminderanschreiben Kliniken (I) 98 H. Reminderanschreiben Kliniken (II) 100 I. Ethikkommission 102 J. Danksagung 107 K. Erklärung zur Eröffnung des Promotionsverfahrens (Anlage 1) 108 L. Erklärung zur Einhaltung gesetzlicher Vorgaben (Anlage 2) 109 / Background: A pregnancy loss or the death of the infant shortly after birth represents a massive psychological burden for the parents affected (Berth et al., 2009; Ellis et al., 2016). Consequential illnesses triggered by the grief, such as post-traumatic stress disorder, anxiety and panic disorders, somatoform disorders or depression, develop in 20 - 30 % of parents (Klapp, 2017). The behaviours and actions of clinic staff have a decisive influence on parents (Ellis et al., 2016). The availability of empathic obstetric care is an important component for parents' mental health as well as an important contribution to the prevention of sequelae (Mills et al., 2014). Half of all affected families want support structures and systems (Ellis et al., 2016). In a survey regarding the quality of care after a perinatal infant death, it was documented that over half of those affected were dissatisfied with the postpartum support in the clinic (Meier Magistretti et al., 2019). 30 % of parents would like helpful and comprehensive post-hospital information, such as contact details for support groups, 13 % would like their concerns to be discussed and 20 % would like public awareness of perinatal death to be raised (Ellis et al., 2016). Based on the great importance of grief processing after a perinatal loss, Lammer's (2014) task model forms the theoretical basis of this study. The model includes aspects of the classical phase models, integrates the aspects of Worden's task model and is applied to grief after perinatal infant death (Lammer, 2014). Research questions/hypotheses: The first research question investigates whether there is a correlation between clinic size and the availability of grief management interventions for parents of infants who have died. The second research question examines the correlation between an extensive offer of support for the clinic staff in dealing with orphaned parents and the number of information offers for grieving parents. For each research question, a positive correlation is hypothesised. Material and method: In this study, the psychosocial care around perinatal loss in maternity hospitals is investigated by means of an empirical study. The aim of this study is to survey the current procedures of psychosocial care in German clinics in order to derive recommendations for action for clinics or professionals on how to deal empathetically with those affected. Applied to grief counselling, a conceptual model was designed from which two research questions were generated, which were investigated by means of a quantitative cross-sectional study in the form of a full survey of German hospitals with maternity wards. The sample includes head physicians, appropriate specialists, nurses, maternity assistants, pastoral workers, psychologists, social workers and members of non-specific professions. The data collection instrument is a questionnaire consisting of 5 question blocks with a total of 13 questions. The data was collected with the software LimeSurvey (LimeSurvey GmbH). Regression analysis was used to analyse the data to test the hypotheses. Results: 206 (33.2 %) clinics participated in the survey, most frequently physicians (69.5 %) and maternity nurses (19 %). The descriptive results show that the clinics offer parents, among other things, goodbyes (99.5 %), contact (95.1 %), making mementos (98.5 %), taking photos (99 %), and contacting still born infant photographers (81.8 %). The satisfaction of the clinic staff with the psychosocial support and its relevance are rated very high. The analyses confirm both hypotheses. The test of hypothesis 1 The larger the clinic, the greater the range of grief management measures for parents of still born infants shows that the size of the clinic has a highly significant positive effect on the number of offers to help parents of still born infants cope with their grief. Testing hypothesis 2 The more extensive the support services for hospital staff in dealing with orphaned parents, the greater the information available for bereaved parents shows that the number of different services for hospital staff has a positive and highly significant effect on the number of information services for parents of still born infant. The linear regression model with the extension to include the number of births, the number of perinatal infant deaths and the situation variables in East or West Germany shows that the number of services offered to hospital staff has a very positive and significant influence on the amount of information available to parents. Conclusions: One possible recommendation for action that can be derived from this study is to offer hospital staff special training on the topic of perinatal infant death syndrome. Addressing the doctor-patient relationship in balint or supervision groups can also lead to an improved situation, but is currently only offered in 27% of the clinics. In order to establish better psychosocial care for bereaved parents, both internal interdisciplinary cooperation and cooperation with external counselling centres are beneficial. In addition, it could be important for parents after a perinatal loss to exchange information with like-minded people, although so far only 40 % of the clinics refer parents to online self-help groups.:Einleitung 1 1. Hintergrund 3 1.1 Begriffliche Bestimmung des perinatalen Kindstodes 3 1.2 Formale Regelungen zum Begriff des perinatalen Kindstodes 4 1.3 „Anhaltende Trauerstörung“ als Krankheitsbild 5 1.4 Trauer als Verlustreaktion und die daraus resultierenden Aufgaben der Trauerbewältigung 5 1.5 Unterstützung im Trauerprozess durch das Fachpersonal 9 1.5.1 Unterstützungsbedarfe der Betroffenen 9 1.5.2 Aufgaben der Trauerbegleitung 10 1.6 Psychosoziale Versorgungsstrukturen in der Geburtshilfe und Frauenheilkunde 16 1.6.1 Gynäkologische und neonatale Versorgungsstrukturen in Deutschland 16 1.6.2 Psychosoziale Betreuung im klinischen Kontext 19 2. Fragestellung und Hypothese 22 3. Material und Methode 27 3.1 Studienpopulation und Sample 27 3.2 Operationalisierung und Fragebogenentwicklung 33 3.3 Datenerhebungsmethode 38 3.4 Datenauswertungsmethoden 39 3.4.1 Quantitative Datenanalyse 39 3.4.2 Qualitative Inhaltsanalyse 41 3.5 Ethische und rechtliche Aspekte der Studie 42 4. Ergebnisse 43 4.1 Hypothese 1 43 4.1.1 Deskriptive Statistik zu Hypothese 1 43 4.1.2 Hypothesentest 44 4.2 Hypothese 2 46 4.2.1 Deskriptive Statistik zu Hypothese 2 47 4.2.2 Hypothesentest 49 4.3 Weitere explorative Datenanalysen 51 4.3.1 Angebote für betroffene Eltern 51 4.3.2 Bewertung der Zufriedenheit 52 4.3.3 Bewertung der Themenrelevanz 52 4.3.4 Standardisierte Vorgehensweise 53 4.3.5 Begriffe für Totgeburten und Kindstode in den Kliniken 54 4.3.6 Unerwähnte Angebote 55 4.3.7 Wünsche des Personals bezüglich der Unterstützung 56 4.3.8 Weitere Kommentare zur Begleitung der Eltern 57 5. Schlussfolgerungen 58 5.1 Zusammenfassung und Interpretation der Ergebnisse 58 5.2 Ergebniseinordnung in den aktuellen Forschungsstand und Handlungsempfehlungen 60 5.3 Kritische Reflexion der eigenen Untersuchung 64 5.4 Resümee und Zukunftsperspektiven 65 Zusammenfassung (Deutsch) 67 Abstract (English) 70 Quellenverzeichnis 73 Anhang 82 A. Abkürzungsverzeichnis 82 B. Abbildungsverzeichnis 83 C. Tabellenverzeichnis 84 D. Operationalisierung der Variablen 85 E. Fragebogen 88 F. Anschreiben Kliniken 96 G. Reminderanschreiben Kliniken (I) 98 H. Reminderanschreiben Kliniken (II) 100 I. Ethikkommission 102 J. Danksagung 107 K. Erklärung zur Eröffnung des Promotionsverfahrens (Anlage 1) 108 L. Erklärung zur Einhaltung gesetzlicher Vorgaben (Anlage 2) 109

I have outlined some objections to soteriologies that presume that only some are given a chance of eternal life. Such soteriologies can include or exclude those mentally competent but lacking human evangelisation. Fundamental to evaluating soteriologies I have looked at both what sin is (being and doing) and what salvation consists in, as regards divine and human interaction. On the one side I have considered God's goodness - would such a being act unethically regarding man's eternity? On the other hand I have looked at whether, and if so in what way, man is required to respond - in what way or ways is chance (if at all) given. Finally I have considered views about those who die in infancy. Here I have tentatively suggested my own theory which seeks to presume that before death every human being may choose to accept of reject God, a choice integral (I suggest) to salvation. / Department of Philosophy, Practical & Systematic Theology / M. Th. (Systematic Theology)

La mort subite du nourrisson (MSN) est un phénomène imprévisible et mal compris. Elle est définie par « le décès d’un nourrisson âgé de moins d’un an dont les causes restent inexpliquées malgré des investigations approfondies, incluant une autopsie et un examen de la scène du décès ». Si l’incidence est en décroissance depuis 1994 et le début des campagnes de prévention, la MSN reste la première cause de décès post-néonatale. La MSN est un phénomène multifactoriel qui survient préférentiellement chez des enfants vulnérables exposés à des facteurs de risques environnementaux. Ainsi, le fait d’identifier ces enfants à risque est un enjeu majeur dans la prévention de cette pathologie. La réponse vagale exacerbée, exprimée biologiquement par une surexpression des récepteurs muscariniques de sous-types M2 (RM2), pourrait être un facteur de risque de MSN. Nous avons déjà constaté cette anomalie biologique dans notre modèle animal d’hyperréactivité vagale et dans des cœurs de nourrissons décédés de MSN. Le but de ces travaux est d’analyser l’expression sanguine des RM2 en tant que paramètre biologique reflétant une hyperactivité vagale chez l’Homme, dans des cas de malaises vagaux et de malaises sévères inexpliqués du nourrisson. L’implication de la génétique a également été étudiée dans une famille présentant plusieurs cas de MSN. Une surexpression des RM2 a été observée chez des patients présentant des malaises vagaux. Pour la première fois, des anomalies biologiques ont été identifiées dans cette pathologie. Si l’on parvenait à valider ce paramètre biologique en tant que marqueur de risque, cela pourrait permettre d’aider au diagnostic différentiel et à la prise en charge thérapeutique de ces syncopes vagales. Les mêmes anomalies ont été observées chez des enfants de moins d’un an présentant des malaises sévères idiopathiques. Après une première analyse des données du séquençage haut débit d’exomes issus d’une famille présentant plusieurs cas de MSN, nous avons pu identifier 3 gènes pouvant être impliqués dans la MSN. Néanmoins, le scénario et le mode de transmission sont difficiles à définir. Les premières hypothèses s’orientent vers un digénisme ou même un trigénisme. La surexpression des RM2 chez les 2 parents et chez certains enfants est un premier élément suggérant la transmission du caractère « hyperactivité vagale » chez l’Homme.Nos travaux ont permis de mettre en évidence une anomalie biologique commune entre les malaises vagaux, les malaises inexpliqués du jeune enfant et la MSN, à savoir la surexpression des RM2. Ce paramètre, facilement dosable dans le sang, pourrait être un élément complémentaire dans le diagnostic différentiel et la prise en charge de ces pathologies, notamment chez les jeunes enfants pour lesquels ces malaises peuvent être très délétères. L’avancée dans le séquençage du génome permettra peut-être l’identification de facteurs de risque génétiques impliqués dans les malaises inexpliqués ou les MSN. / Sudden Infant Death Syndrome (SIDS) is an unpredictable and poorly understood phenomenon. It is defined as the "sudden unexpected death of a child younger than one year during sleep that cannot be explained after a postmortem evaluation including autopsy, a thorough history, and scene evaluation". Although the incidence has been decreasing since 1994 and the start of prevention campaigns, SIDS remains the leading cause of post-neonatal death. SIDS is a multifactorial phenomenon that occurs preferentially in vulnerable infants exposed to environmental risk factors. Thus, identifying these children at risk is a major challenge in the prevention of this pathology. The exacerbated vagal response, biologically expressed by overexpression of muscarinic M2 receptors (M2R), may be a risk factor for SIDS. We have already observed this biological abnormality in our animal model of vagal hyperreactivity and in hearts of SIDS. The aim of this work is to analyze the blood expression of M2R as a biological parameter reflecting vagal hyperreactivity in humans, in cases of reflex syncope and idiopathic apparent life-threatening events (iALTE) of infants. The involvement of genetics has also been studied in a family with several cases of SIDS (SIDS family). Overexpression of M2R has been observed in patients with reflex syncope. For the first time, biological abnormalities have been identified in this pathology. If this biological parameter could be validated as a risk marker, it could help for differentially diagnosis and treatment of these vagal syncopes. The same abnormalities were observed in children under one year old with iALTE. After a first analysis of the data of the “next generation sequencing” of the exomes of our “SIDS family”, we were able to identify 3 genes that could be involved in SIDS. However, the scenario and the mode of transmission are difficult to define. The first hypotheses are oriented towards a digenism or even a trigenism. The overexpression of M2R in both parents is a first element suggesting the genetic transmission of the character "vagal hyperactivity" in humans. Our work highlights a biological abnormality which is common to reflex syncope, iALTE and SIDS, namely the overexpression of M2R. These results confirm the hypothesis of the involvement of the vagal system overactivity in these pathologies. This parameter, easily measurable in the blood, could be a complementary assessment useful in the differential diagnosis and the management of these pathologies, in particular in infants for whom syncope can be very harmful. The development of the sequencing of human genome will probably allow the identification of genetic risk factors involved in iALTE or SIDS.

No description available.

No description available.

Doctor of Public Health / For many years the major cause of infant mortality in NSW has been the result of Sudden Infant Death Syndrome (SIDS). Statistics show the area defined as 'Western Sydney' is no exception, and in 2002, a report prepared by the Epidemiology, Indicators, Evaluation and Research Unit (EIRE) in Western Sydney presented data indicating SIDS rates in the area were higher than the state average. In particular, two Local Government Areas (LGAs) had clusters of SIDS deaths. Previous Australian research identified a higher risk of SIDS and other causes of infant mortality in Aboriginal and Torres Strait Islander populations. The areas of Western Sydney where SIDS rates were higher than expected were home to Aboriginal, Torres Strait Islander and Pacific Island residents. The number of SIDS deaths in Aboriginal infants did not explain the higher than expected rate of SIDS in the areas under investigation. Studies undertaken in New Zealand and the Pacific Islands have identified higher than expected risk of SIDS in Maori and Pacific Island communities in those countries, although this has never been studied in Pacific Island residents living in Australia. The reasons for these communities exhibiting a higher than normal SIDS rate is not completely understood, but can be partially explained by behavioural practices which are known to impact adversely on the risk of SIDS. This study sought to investigate the level of knowledge concerning the prevention of sudden and unexpected death in infants (SUDI) in three key groups of infant caregivers: general practitioners, nurses and parents living or working in the area geographically defined by Sydney West Area Health Service (WSAHS). In addition, the study sought to identify any variation in knowledge of SIDS reduction strategies in the three groups under study, and to investigate factors influencing knowledge and practice in these participants. The study findings were then used as a basis on which to develop strategies and recommendations to enhance the delivery of safe sleeping messages through the health care system. Using a combination of qualitative and quantitative methods, this cross-sectional study highlights a number of issues around infant care practices and the major influences on new parents living in a multicultural community. Results of the study showed there is a large variation in knowledge around safe sleeping practices (including SIDS reduction strategies) in all the groups studied. Although educational campaigns are conducted regularly, many general practitioners and parents are confused about the key SIDS reduction messages and still place infants in sleeping positions considered unsafe. While nurses and midwives were aware of the SIDS reduction strategies, they still occasionally used infant sleeping positions considered unsafe. General practitioners born overseas in a country where English is not the first language were less likely to be familiar with safe sleeping messages, including SIDS reduction strategies. Families from a Culturally and Linguistically Diverse (CALD) background were less likely to have seen SIDS information in their own language than families who spoke English, and as a result were more likely to use traditional methods of infant care, including co-sleeping with siblings and parents and side or tummy sleeping. CALD parents were more likely to rely on herbal remedies and friends and family for assistance, than English speaking parents who accessed health professionals as the first point of call when infants were unwell. The study identified a relatively recent practice, which until reported in this study, has not been documented in the literature. The practice of draping infant prams with blankets originated from the Cancer Council of Australia guidelines which recommend covering a pram with a light muslin wrap to protect infants’ skin from the sun. It appears parents have misinterpreted this message and are covering infant prams with blankets to encourage sleep, even when sun exposure is not an issue. Research suggests that poor air quality around the head of an infant may affect an infant’s arousal response. While no research has been conducted on the air quality around an infants head when covered by a heavy blanket in a pram, it is possible based on research into air quality around infants, that that this practice may increase the risk of sudden and unexpected death in an infant. In conclusion, this study found that multiple changes to the SIDS reduction messages since the initial ‘Reduce the Risks’ Campaign have led to confusion about ways of preventing SIDS in GPs, nurses and parents in Western Sydney. The study makes seven recommendations aimed at improving knowledge of safe sleeping practices in these groups, and optimizing health outcomes for infants using a collaborative approach to service delivery and future initiatives.

I have outlined some objections to soteriologies that presume that only some are given a chance of eternal life. Such soteriologies can include or exclude those mentally competent but lacking human evangelisation. Fundamental to evaluating soteriologies I have looked at both what sin is (being and doing) and what salvation consists in, as regards divine and human interaction. On the one side I have considered God's goodness - would such a being act unethically regarding man's eternity? On the other hand I have looked at whether, and if so in what way, man is required to respond - in what way or ways is chance (if at all) given. Finally I have considered views about those who die in infancy. Here I have tentatively suggested my own theory which seeks to presume that before death every human being may choose to accept of reject God, a choice integral (I suggest) to salvation. / Department of Philosophy, Practical and Systematic Theology / M. Th. (Systematic Theology)