Project

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Dying at life's beginning

English title Dying at life's beginning
Applicant Fleming Valerie
Number 139359
Funding scheme NRP 67 End of Life
Research institution Institut für Hebammen Zürcher Hochschule für Angewandte Wissenschaften ZHAW
Institution of higher education Zurich University of Applied Sciences - ZHAW
Main discipline Health
Start/End 01.09.2012 - 30.06.2015
Approved amount 119'551.00
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Keywords (8)

Palliative Care; Prenatal Diagnosis; Continuity of Care; Fetal incompatibility of Life; Support; Parental Choice; Professional Attitude; Perinatal Death

Lay Summary (German)

Lead
Werdende Eltern, die mit der Diagnose konfrontiert sind, dass ihr ungeborenes Kind nicht lebensfähig ist, stehen einer enormen Herausforderung gegenüber. Das Projekt zielt darauf ab, den Umgang mit dem Tod des Kindes aus der Perspektive betroffener Eltern und Fachpersonen zu beleuchten.
Lay summary
Hintergrund
Nach der Diagnose, dass ihr ungeborenes Kind nicht lebensfähig ist, werden Eltern in der Regel mit der Entscheidung konfrontiert, die Schwangerschaft vorzeitig zu beenden. Diese Entscheidung wird unter den Begriffen des "chosen loss" bzw. des "lost choises" diskutiert, welche die Unausweichlichkeit des Verlusts eines gewünschten Kindes verdeutlichen. Nach einem solchen Schwangerschaftsabbruch treten oft Trauerreaktionen, aber auch psychische und psychiatrische Erkrankungen auf. Studien zeigen, dass eine bedürfnisorientierte Versorgung der Eltern zu deren Entlastung beiträgt und sie darin unterstützt, den Sterbeprozess des Kindes zu begleiten. Das Projekt stellt die Frage, welche Versorgungsangebote in der Schweiz derzeit vorhanden und welche Anpassungen erforderlich sind, um diese Versorgung bedürfnis- und familienorientiert zu gestalten.

Ziel
Das Projekt zielt darauf ab, den Umgang mit dem Sterben des Kindes aus der Perspektive der Eltern und Fachpersonen zu untersuchen. Darauf aufbauend werden Empfehlungen für die Gestaltung einer künftigen interprofessionellen Versorgung formuliert. Zu diesem Zweck sollen mindestens 30 Eltern sowie 30 Fachleute befragt werden.

Bedeutung
Die Ergebnisse des Projekts tragen dazu bei, die bestehende Praxis vor dem Hintergrund der Erfahrungen betroffener Eltern und Fachpersonen zu reflektieren. Auf dieser Grundlage können Empfehlungen abgeleitet werden, wie das Handeln und die Zusammenarbeit des Gesundheitspersonals zu verbessern ist. Insgesamt soll ein Beitrag zur Prävention schwerwiegender gesundheitlicher Spätfolgen bei den betroffenen Familien geleistet werden.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (French)

Lead
Les futurs parents confrontés au diagnostic de non-viabilité de leur enfant à naître sont soumis à une épreuve énorme. Le projet vise à éclairer comment la mort de l’enfant est appréhendée par les parents touchés et les professionnels.
Lay summary

Contexte
Après le diagnostic de non-viabilité de leur enfant à naître, les futurs parents sont en règle générale confrontés à la décision d’interrompre prématurément la grossesse. On parle de cette décision en termes de «chosen loss» ou «lost choices», soulignant l’inéluctabilité de la perte d’un enfant désiré. Après une telle interruption de grossesse, il s’ensuit souvent des réactions de deuil, mais aussi de troubles psychiques et psychiatriques. Des études montrent qu’une prise en soins orientée vers les besoins des parents apporte soulagement et soutien pour accompagner le processus de la mort de leur enfant. Ce projet se penche sur la question des offres de prise en soins actuellement disponibles en Suisse et des adaptations qui seraient nécessaires pour orienter cette prise en soins vers les besoins et les familles.

But
Le projet vise à étudier comment la mort de l’enfant est appréhendée du point de vue des parents et des professionnels. A partir de cette construction, des recommandations seront formulées pour la mise en place d’une prise en soins interprofessionnelle. Dans cette perspective, au moins 30 parents et 30 professionnels seront interviewés.

Portée
Les résultats de ce projet contribueront à réfléchir sur la pratique actuelle, compte tenu des expériences des parents touchés et des professionnels. Sur cette base, il sera possible d’établir des recommandations permettant d’améliorer les pratiques et la coopération entre personnel de santé. In fine, il s’agit de contribuer à prévenir de graves séquelles de santé à long terme dans les familles concernées.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

Lead
Parents who learn that their unborn child has a terminal condition face an enormous challenge. This project aims to throw light on dealing with the death of the child from the perspective of the parents and health care professionals.
Lay summary
Background
When parents receive a prenatal diagnosis of their child’s terminal condition, they are usually confronted with the decision to terminate the pregnancy. With this decision, parents are said to experience "chosen losses" and "lost choices", which makes clear the inevitability of the loss of a desired child. After termination of the pregnancy, the parents commonly experience grief reactions but also mental and psychiatric disorders. Studies have shown that caring for parents guided by their needs can ease their burden and support them as they deal with the death of the child regardless of whether they choose to continue or terminate the pregnancy. This study is investigating what care and support services are available in Switzerland today and examining whether changes are needed to make this care and support need- and family-oriented.

Aim
This project aims to throw light on having to deal with the death of the child from the perspective of the parents and health care professionals. Based on the findings, recommendations will be made for the design of future interprofessional care and support services. For this purpose, a minimum of 30 parents and 30 health care professionals will be questioned.

Significance
The results of this project will contribute towards a rethinking of current practice, based on the experiences of parents and health care professionals. On this basis, recommendations will be made for improving care by and cooperation among health care personnel. All in all, this should contribute towards the prevention of serious health consequences in the long term.

Direct link to Lay Summary Last update: 18.06.2013

Responsible applicant and co-applicants

Employees

Collaboration

Group / person Country
Types of collaboration
University of Vienna Austria (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Fachstelle Fehlgeburt und perinataler Kindstod FpK, Bern Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Universitätspittal Zürich Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Research Infrastructure

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Winterthur Hebammensymposium Poster Terben am Lebensanfang: die Ergebnisse 18.01.2015 Winterthur, Switzerland Fleming Valerie; Pehlke-Milde Jessica; Parpan Franziska;
International Confededration fo Midwives triennial conference Talk given at a conference Dying at life's beginning: initial conclusions 02.06.2014 Prague, Czech Republic Fleming Valerie; Amsler Marlen; Pehlke-Milde Jessica; Parpan Franziska;
Swiss Conference of Health professionals Talk given at a conference Sterben am Lebensanfang 09.04.2014 Freiburg, Switzerland Amsler Marlen;


Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Midwifery students' symposium 05.11.2014 Ljubljana, Slovenia Fleming Valerie;
Annual symposium of midwives and midwifery students 04.11.2014 Klagenfurt, Austria Fleming Valerie;


Communication with the public

Communication Title Media Place Year
Media relations: print media, online media Sterben am Lebensanfang hebamme.ch Western Switzerland German-speaking Switzerland 2012

Associated projects

Number Title Start Funding scheme
139359 Dying at life's beginning 01.09.2012 NRP 67 End of Life
153511 Giving birth: expectations & experiences of first time mothers in Switzerland 01.10.2014 Project funding (Div. I-III)

Abstract

AIM: This project addresses the current needs in basic care for parents who have been confronted by a lethal fetal diagnosis, by an interdisciplinary group of health professionals. It aims to illuminate current treatment associated with a lethal fetal diagnosis and the subsequent death of the child regardless of whether parents make the decision to terminate or continue the pregnancy. Objectives of the project are to investigate support that is available in Switzerland from the perspective of affected parents and involved professionals from the social, medical and therapeutic professions the offer of support in Switzerland subject and make recommendations in relation to further professional development.METHOD: To achieve these objectives a qualitative methodology is proposed. A minimum of 30 parents (20 women and 10 men) will be interviewed using the method of problem-centered interviews and a minimum of 30 experts will be interviewed using an expert interview process. Inclusion criteria for the parents are that they have experienced a lethal fetal diagnosis within the last five years resulting in the death of the child during pregnancy (spontaneously or by means of an abortion) or shortly after birth. Access to affected parents will primarily be through the established network “Fachstelle Fehlgeburt und perinataler Kindstod“. Experts will be sought from a wide variety of sources to include all possible professional and expert groups that are involved during pregnancy, childbirth, postpartum and possibly palliative care and possibly long term therapeutic care. Access to these groups will be facilitated by the “Interdisziplinären Instituts für Ethik im Gesundheitswesen Dialog Ethik”. All participants will be contacted in accordance with the requirements of the cantonal ethics committees and data protection law and will be required to give their written informed consent before participation. Interviews will be conducted by the research members of the research team specially trained in working with vulnerable people. Independent counsellors will be available to any participants should this be required. Interviews will be digitally recorded and fully transcribed. The analysis will be carried out through a process of qualitative content analysis.RESULTS: Results of the project will help to identify existing practices utilised in dealing with parents who have been given a lethal fetal diagnosis. Current support available will be illuminated in the light of the experiences of affected parents. Recommendations will be made that may improve the experience and actions of associated professionals. On this basis, guidelines for interdisciplinary professional action will be developed which optimise continuity of care for affected parents. Finally results should assist with the prevention of severe health complications as a result of miscommunication between parents and professions.
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