ORCHID Annual Report 2023 - Flipbook - Page 21
The death of a child is a deeply distressing event. Whilst we have evidence
that nurses have the potential to either positively or negatively impact the
experience of parents when a child dies, we also know that nurses frequently
report feeling ill-equipped to support parents and are often fearful of fulfilling
this important and fundamental role of nursing. There are a range of practices
and services offered to parents in terms of where their child9s body may be
cared for between the time of death and the funeral, and how much contact
they are offered. Very little is understood about this, leading to inadequate
preparation of nurses and inequity in service provision.
This NIHR funded study aims to address these challenges specifically within
the context of Children9s Palliative Care (where the death of a child is
expected) with three main objectives: 1. To describe the post-death care
services provided by NHS services in both acute and community settings 2.
To understand the experience of both bereaved parents and nursing staff who
support them in providing care or having contact with the child9s body 3. To
produce recommendations for practice and education to improve the quality
of services and care after death in Children9s Palliative Care.
Tara is completing this study as a PhD registered at the Institute of Child
Health, UCL. During 2024, Tara completed data collection and analysis and is
now writing up the study.
Digital profile:
ORCID ID: 0000-0001-6154-1829
Conference Presentations
Kerr-Elliott T, Darlington A, Oulton K, Gibson F (2024) Care doesn9t end at
death: provision of post-death care for children in England. 6th Maruzza
International Congress on Paediatric Palliative Care, Rome, October 2024
Invited talks
Kerr-Elliott T. Care doesn9t end at death: Exploring the experiences of
parents and nurses in the care of children after an expected death.
Association Of Paediatric Palliative Medicine annual conference, London,
November 2024
Jisoo Kim
MRCPCH, MBChB
NIHR Clinical Doctoral Research Fellowship, Institute of Child
Health/UCL
Study title: Investigating the modifiable psychosocial variables influencing
access and outcomes after kidney transplantation in children
Supervisors: Professor Stephen D. Marks, Professor Jo Wray
April 2020 – 2026
Project Aims:
1.
2.
To evaluate the psychosocial factors that are actual or perceived
barriers to paediatric renal transplantation which may be associated with
poor transplant outcome
To synthesise findings that would inform recommendations about which
psychosocial factors would potentially delay or facilitate access to
kidney transplantation in CYP
The systematic review and phase 1 (qualitative) of the mixed-methods study
have been completed. Phase 1 comprised interviews with young people with
chronic kidney disease, their parents and health professionals providing care
to them. Following analysis of the interviews, questionnaires were selected
for use in Phase 2, based on the themes that were identified in the
interviews. The study steering group had a critical role in approving the final
questionnaire selection.
After a successful upgrade in October 2021, Ji Soo went on maternity leave
at the end of 2021 and has returned to her PhD studies in late-2022. The
study has completed Phase 2 recruitment and follow-up at 12 out of 13
paediatric nephrology centres in the UK. Ji Soo will be going on a second
maternity leave in April 2025 – final study analyses will be completed after
her return in April 2026.
Digital Profile:
ORCID ID: 000-0001-6090-1650
Research gate profile: https://www.researchgate.net/profile/Ji_Soo_Kim7
Published Abstracts
Kim JS, Wray J, Ridout D, Plimb L, Nitsch D, Robb M, Marks DS. (2024)
Protocol for a multicentre prospective exploratory mixed-methods study
investigating the modifiable psychosocial variables influencing access to and
outcomes after kidney transplantation in children and young people in the
UK. BMJ Open;14: e078150.https://doi.org/10.1136/bmjopen-2023-078150
