Evaluating HELP: A multi-site study comparing HELP to usual care.
Research type
Research Study
Full title
Evaluating HELP: an Intervention for Parents Sharing Information about Leukaemia with their Ill Child (Phase 2 of 2: A Multi-site Study Comparing HELP to Usual Care).
IRAS ID
117897
Contact name
Faith Gibson
Contact email
Sponsor organisation
Great Ormond Street for Children NHS Foundation Trust & The UCL Institute of Child Health
Research summary
In order to better support parents in their information sharing roles with their children and other family members, we have created and now plan to undertake an evaluation of a web-based intervention called: Harmonising Education about Leukaemia for Parents (HELP).
Phase 2 of the HELP study will be conducted in two parts. In part 1, interviews will be conducted with 2 health professionals at each named hospital about how complex information is routinely shared with families in order to inform the analysis part 2 of the study.
Part 2 of the HELP study is a prospective two group non-randomised study. The primary research question is do parents using HELP experience less parenting stress in comparison to parents receiving usual information? Data will be collected at 4 time points during the first 6 months of treatment.
The HELP study will recruit families at five hospitals in England: Birmingham Children’s Hospital, Great Ormond Street Hospital, the Royal Hospital for Children Bristol, the Royal Marsden Hospital and Southampton General Hospital. We aim to recruit 150 families into the study. All of these families will have a child newly diagnosed with ALL aged between four and eleven years old. We will recruit two groups of families. During the first 12 months of recruitment into the study, all families who join the study will receive the usual information they would normally receive at their hospital (group 1). We aim to recruit 75 families into group 1. During the second year, in addition to receiving the usual information, new families will be given access to the HELP website (group 2). We aim to recruit 75 families into group 2. A subgroup of 40 parents and 40 children from both groups will be invited to take part in a Leukaemia Event Knowledge Interview (LEKI).
REC name
London - Dulwich Research Ethics Committee
REC reference
13/LO/0625
Date of REC Opinion
20 May 2013
REC opinion
Favourable Opinion