Case study: Supporting Young Families when a Parent has Died: Making a Difference to Bereaved Families
Supporting Families when a Parent has Died (SFPD), is funded by Yorkshire Cancer Research, seeking to create a Supportive Response model for children and families processing the loss of a parent with corresponding resources. We spoke to the Principle Investigator Alex Wray, nurse and researcher, who is undertaking this research for her PhD at Hull York Medical School’s Wolfson Palliative Care Research Centre on the importance of the study.
Why did you choose bereavement as your research area?
I have worked as a nurse for 15 years and the majority of these years have been in end of life care. Here, I have become highly aware of how death is dealt with in a clinical setting and I have observed first hand how bereavement support must be improved and include children. I decided that I wanted to do research in bereavement, as it was an area where I could make a real difference.
The SFPD study sits with the TRANSFORM team, which aims to transform healthcare inequalities for those with cancer in Yorkshire. There is not a standard procedure for healthcare professionals to help families through a death, nor are healthcare professionals given training on bereavement and many are unaware of what support is actually available.
This lack of awareness, training and standard procedure has resulted in massive differences between bereavement services available to people, even across Yorkshire alone, and thus inequality.
In my most recent clinical role, as a Specialist Nurse in Organ Donation, was the only role where I was given designated time to be with families to help them with the death and help them decide if organ donation was a suitable option.
Working with bereaved families, it is clear that many have really struggled and may have not had the support they required. Some families have had to set up their own bereavement groups to get support for their children.
It is clear that more could be done and must be done. At the moment, a bereavement booklet is given, which signposts services and practical considerations.
Why does the study focus on children?
There has been very little research on children following the death of a parent. While it is widely accepted that a supportive response is needed from existing networks for those going through a loss of a parent, it has not yet been articulated what a supportive response should look like for children.
Therefore the SFPD study hopes to provide guidelines that will underline how to support children experiencing the loss of a parent.
Sometimes it is believed that children do not understand loss and families attempt to protect the children by not discussing death with them. However children do have agency and understand death, witnessing it in the media and perhaps experiencing it in the current Covid-19 pandemic. So, children must be involved and given choice when handling the death of a parent.
How will the study gather information to create a Supportive Response Framework?
As there is very little research on assisting children experiencing a death of a parent, the study is quite open ended. I will be interviewing up to thirty children between the ages of ten and eighteen, who have lost a parent and I will be interviewing their surviving parents. It will have been at least 12 weeks since their bereavement, they will choose to talk to me when they are ready. These 1-hour interviews will take place over video or phone call and will give families an opportunity to share their story.
I am recruiting for the study on social media and through bereavement charities, where suitable individuals can contact me and be opted into the study.
The questions I will be asking will be to understand what a supportive response looks like for each individual and explore their experiences and perspectives of support. I will be exploring what the parents and children's existing support networks did, how they supported each other, what they thought was helpful and was not and what they felt they still needed.
What do you expect to be challenging about the study?
As loss affects everyone the implications of the study are quite wide-reaching. The model of a Supportive Response and accompanying resources will be incredibly useful to families going through loss and healthcare professionals assisting these families.
I am hoping that my research will inform policy, ensuring that there is equal and universal assistance of families for bereavement.
How can I get involved?