The experiences of children and caregivers who receive PICU storybooks
Research type
Research Study
Full title
The acceptability and feasibility of a Paediatric Intensive Care Unit (PICU) Storybooks Intervention for children and their caregivers: A multiple-case series study.
IRAS ID
251241
Contact name
Laura McGunnigle
Contact email
Sponsor organisation
Research Integrity and Governance Office
Duration of Study in the UK
0 years, 10 months, 26 days
Research summary
Admission to a Paediatric Intensive Care Unit (PICU) can be highly stressful for both patients and their caregivers, with marked psychological distress, including post-traumatic stress symptoms (PTSS, sometimes being reported to persist for months or years post-discharge. Despite this, few trauma-focussed post-PICU interventions have been investigated to date. In some adult intensive care units, patient dairies are used to help families gain more information and talk about about their ICU experiences, which is thought to reduce PTSS. In the only study about paediatric ICU diaries, participating families reterospectively reported finding them helpful, but more information is needed before planning a full randomised controlled trial. Further, a “storybook” format may be more adaptable to the developmental variation within paediatric populations. The current study therefore aims to gain initial insights into the acceptability and feasibility of PICU storybooks and to monitor associated change in symptoms. Dyads of parents and children aged three to 18 years will be invited to participate upon discharge from the St Georges Hospital PICU, and will receive an individualised, developmentally appropriate storybook about their PICU journey that the parents will co-create with researchers. Parents, and children over eight years, will be asked to give background information (e.g. age, gender and ethnicity) and complete questionnaires about symptoms of depression, anxiety and PTSS, plus general daily functioning. The latter will relate to four time points: the period prior to PICU admission, discharge, and three and six months post-discharge. Participants will also be asked to keep a brief diary of storybook use, and will be interviewed about their experience of the intervention and research participation at three and six months post-discharge. It is anticipated that the findings will inform ongoing intervention development and planning of larger scale evaluations, which in turn may improve the psychological support offered to families following PICU.
REC name
London - Riverside Research Ethics Committee
REC reference
19/LO/0287
Date of REC Opinion
18 Mar 2019
REC opinion
Unfavourable Opinion