Parental Transitions after Losing their Child to a Serious Illness
Research type
Research Study
Full title
Experiences of transitioning from parenting a child with a life-limiting illness to living without them after their death.
IRAS ID
360730
Contact name
Rhiana Robinson
Contact email
Sponsor organisation
University of Edinburgh
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 9 months, 16 days
Research summary
More children are being diagnosed with life-limiting illnesses, with around three dying each week - leaving parents facing a devastating, life-changing loss. Many describe entering a new reality of intense, long-lasting grief that deeply affects their quality of life. Despite the profound impact of this transition, little is known about how parents experience this or what support they need.
This study aims to better understand parents’ experiences after losing their child to a life-limiting illness and explore their transition from parenting a seriously ill child to becoming a bereaved parent. It is hoped this will begin to address the gap in the literature and provide insight into parents’ experiences to inform support that is responsive to their needs. Biological, adoptive or step-parents aged 18 or over whose child (under 18) died from a terminal illness, between 6 months to 5 years ago, can take part.
Potential participants will be approached by NHS, third-sector or other relevant professionals and given a research leaflet. Those interested can contact the researcher directly for further detail about the study. If they choose to participate, written consent will be obtained following the opportunity to ask questions.
Participants will be invited to an in-person interview at a community location, such as a GP surgery or community centre, within the Northeast of Scotland. Online interviews will also be offered. Interviews will be recorded using an NHS Dictaphone encrypted to the standard of AES256 or equivalent. Data will be transcribed, anonymised, securely stored and analysed.
This study hopes to give bereaved parents a voice and help shape the care they receive. Findings will be shared with NHS and third sector organisations in a meaningful way, ensuring the language and content is accessible. Additionally, the research will be published in an academic journal and made available on the University of Edinburgh research database.
REC name
London - London Bridge Research Ethics Committee
REC reference
26/LO/0194
Date of REC Opinion
27 Feb 2026
REC opinion
Favourable Opinion