COST Action members Claudia Meier Magistretti and Valerie Fleming have successfully gained a grant for 159,000 Swiss Francs from the Swiss Academy for Medical Sciences (http://www.samw.ch/de.html) for their project “When new life meets death”, a participatory research project to improve care for families whose babies are given a diagnosis incompatible with life while in utero and who continue or terminate the pregnancy, who experience an intrauterine death resulting in stillbirth, or whose babies die within the first month of life.
Background: In Switzerland childbirth is generally assumed to be a healthy, normal life experience accompanied by safe and efficient professional care. However, there are also experiences which are less positive and may even result in the death of the baby. In 2014 throughout the country there were 402 stillbirths, 125 abortions after 22 weeks and 232 perinatal deaths.
Aims: to address the gaps in care provided to parents whose babies are given a diagnosis incompatible with life while in utero and who continue or terminate the pregnancy, who experience an intrauterine death resulting in stillbirth, or whose babies die within the first month of life. To develop a best practice model of palliative and bereavement care for families of babies in any of the affected groups. Objectives: to define what palliative and bereavement care was provided to parents of affected babies; to identify elements of best practice from the parents’ perspective; to identify gaps in palliative and bereavement care provision.
Design, setting methods and analysis: As this is a qualitative study an hypothesis is not appropriate. The research will be carried out in two stages in each of the three main language regions of Switzerland.
Stage one: Purposive sampling will be carried out in the main cantonal hospitals in Ticino, Valais and Zürich. In each canton two parents will be recruited from each of the four target groups (n = 24).
Semi-structured focused interviews of between 45 and 90 minutes will be carried out with the participants addressing each of the objectives above in the language of choice of the participant.
Analysis stage one. Data will be transcribed verbatim and analysed in depth. Initial codes will be done in the original language with memos in German. Themes and a tentative model will be generated and validated by the participants.
Stage two: Data collection will involve one focus group interview of approximately 1.5 hours in each of the three cantons, with one parent, one midwife, one gynaecologist and one other such as a spiritual adviser or a psychologist. The first 30 minutes will ask the group to consider the gaps in care identified by Fleming et al (2016); the next 30 minutes will ask them to reflect critically on the model of care proposed by NHS Scotland (2013) and the final 30 minutes will give consideration to the group’s views of an ideal service for their canton. In the analysis phase data will be subjected to an hermeneutic analysis, comparing them with that of the parents in stage one, and out of this a tentative model of palliative care will be generated.
Relevance: The proposed project seeks to fill a gap clearly evident in existing studies carried out in Switzerland and indeed elsewhere through the in depth analysis of parents’ views and the comparison with health professionals’ experiences.