Social and cultural influences on parental experiences of newborn death
Note: we have extended the deadline for expressions of interest for this opportunity to the 28th May 2021
The aim of the study is to understand the experience of parents following newborn death. As part the study we will also explore the influence of social and cultural background on parental grief and bereavement.
Understanding the lived experience of parents is very important to ensure culturally appropriate bereavement care and support is provided.
We are seeking 6-8 bereaved parents who have experienced newborn death (i.e. death within first 28 days of life) in an intensive care setting in the UK to be involved in this study as lived experience advisors.
Please note, if application numbers exceed our planned capacity, we will select members who represent diversse social and cultural perspectives and have experience most relevant to the project.
What will I be asked to do?
Due to the sensitive nature of this research topic, lived experience advisors will help the research team to ensure that the research is approached in an acceptable and sensitive way. As an advisor, your involvement is likely to include (but is not limited to) the following activities:
- Review a 2-3 page patient information sheet and lay summary for the project as well as other relevant study documents such as interview topic guide, participant consent forms to ensure they are acceptable and appropriate for parents participating in the study.
- Attendance at study management group meetings (via videoconference at present) for 2-4 times a year to help shape the design and undertaking of the study based on your own experiences.
- Reviewing study outputs (abstracts, papers, posters).
- Supporting dissemination (supporting the development of lay summaries, attendance at dissemination events, networking with relevant charities and support groups).
When and where?
Involvement in this study will take place remotely for the for the foreseeable future.
The study is likely to run for another 2 year during which you will be involved in the Study Management Group meetings (2 - 4 times per year). We may also contact you in between meetings for further input and advice and hold adhoc meetings with lived experience advisors when needed (we will always notify you of such activities within a reasonable timeframe).
We are planning an initial virtual meeting in the first week of June 2021.
Will I get anything for taking part?
We will offer honorarium payment for your involvement in the project as well as covering resasonable expenses according to 2020 NIHR Centre for Engagement and Dissemination reimbursement guidelines, which are available here. You will need to provide your address and bank details if you would like to be reimbursed for your involvement. Further details regarding payment, including tax implications is provided in recently updated NIHR guidance here.
How do I get involved?
If you are interested in taking part in this opportunity, please click the green button "I would like to take part" at the top of this page to register your interest online. Note: if you do not wish to sign up through VOICE, please get in touch with the researcher Stuti Pant directly at [email protected]
Registration will close on Friday 28th May 2021 and all applicants will be contacted before, or shortly following, this date to let them know the outcome of their application.
Unfortunately, it may not be possible to involve everyone who applies if the number of applications exceed the quota for this opportunity. Priority will be given to establishing a diverse group of people who bring lived experience most relevant to this project.
Meet the researcher
My name is Stuti Pant and I am a PhD researcher based at Imperial College London, the above opportunity relates to my PhD project.
My background is in social work and I have been working in maternal and newborn health for almost a decade.I am particularly interested in the ethical dilemmas in newborn care in an intensive care setting. As part of my engagement with the ethical committees and Newborn Intensive Care Unit settings, I realised the potential role of culture, personal values, belief system and social background on the grief and bereavement among parents who experience newborn death as well as decision making and decided to pursue this as my PhD research topic.
I look forward to working with you on my PhD project. If you have any queries about the lived experience advisor role or the research project, please feel free to get in touch with at [email protected]