Equality for CYP with learning disabilities (LD) - Phases 2-4
Research type
Research Study
Full title
Pay More Attention: Ensuring equal access to high quality hospital care and services for children and young people with and without learning disabilities: Phases 2-4.
IRAS ID
178525
Contact name
Kate Oulton
Contact email
Sponsor organisation
UCL Institute of Child Health
Duration of Study in the UK
2 years, 10 months, 30 days
Research summary
BACKGROUND
Despite comprehensive evidence of health inequalities for adults with a learning disability, there has yet to be a full review of whether these inequalities apply to children with a learning disability and a long term condition and their families. Qualitative evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for children with a long term condition and learning disability exists. The extent to which their experience differs from that of parents of children with a long term condition without a learning disability is unknown. The views and experiences of children with a learning disability are missing. A major uncertainty is whether they face the same or different inequalities as adults with a learning disability.
AIM
To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate or prevent children with a long term condition and a learning disability and their families receiving equal access to high quality care and services.
SETTING
This study has four phases. Phase 1 involved 24 hospitals in England. Four Phase 1 hospitals will be included in Phases 2-4.
METHODS
In phases 2-4 data will be collected by, a) hospital tour and interviews with children with a long term condition with and without a learning disability, b) parent hospital diary and retrospective account of any safety concerns, c) home interviews with the child’s parents after hospital discharge, d) hospital and community staff questionnaire, e) children and parent satisfaction questionnaire and f) retrospective mapping of hospital activity. Phase 4 involves workshops with children, parents, and learning disability experts who will assist in the development of a DVD training package for healthcare staff and students.
The findings will be disseminated widely to all relevant stakeholders using a variety of approaches.REC name
London - Stanmore Research Ethics Committee
REC reference
16/LO/0645
Date of REC Opinion
16 May 2016
REC opinion
Favourable Opinion