Developing a national bereavement care website
Rióna Cotter (1), Dr Keelin O’Donoghue (2)
(1) HSE Programme Manager for the Bereavement Standards, Ireland (2) Consultant Obstetrician and Gynaecologist, Senior Lecturer University College Cork, Ireland; PI, INFANT centre, Ireland
Pregnancy loss is the most common complication of pregnancy. The end of a pregnancy or the death of a baby through miscarriage, stillbirth, neonatal and infant death can have a devastating and long-lasting impact on the woman and her family. The Implementation Group for the National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death in Ireland has found that the information available to bereaved parents and health care providers alike differs greatly from area to area. We found that, increasingly pregnant women are accessing information about pregnancy and childbirth from the internet. Supported by funding from the Irish Hospice Foundation, the website, “PREGNANCY AND INFANT LOSS IRELAND” is an initiative of the afore-mentioned Implementation Group.
A multidisciplinary working group, with a parent representative, worked to develop the website in collaboration with a commercial design company. This group researched similar websites and looked at their content and intended use. The Parents Forum from the Standards Implementation programme were asked what they thought would be useful to bereaved parents when accessing such a website. It was agreed by all involved that the website should be a resource for bereaved parents and health care professionals to signpost them to information and support structures. Then information was compiled and written by the Programme Manager in collaboration with the working group. The design company then designed and built the website around the information provided to them. The final design and content was shared with expert colleagues, at a National Bereavement Forum with their feedback considered. The website was publicly launched in April 2019.
A website management group was set up to oversee the management of the website, to ensure content is up-to-date and to assess the need for further development of the website.
A valuable resource for parents who experience pregnancy loss the website provides accurate and accessible information on a sensitive subject, shares the latest research on pregnancy loss, promotes emotional well-being, and offers details on how to access the appropriate support services.
Ethical approval was not necessary for the development of the website.