A Quality of Life Measure for Families of Children with ID/Autism
Research type
Research Study
Full title
A Quality of Life Measure for Families of Children with Intellectual Disabilities (ID) and/or Autism
IRAS ID
256099
Contact name
Freddy Jackson Brown
Contact email
Sponsor organisation
AWP NHS Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Improving Family Quality of Life (FQoL) is a primary outcome for services supporting families with children with intellectual disabilities (ID) and/or autism. However, at present there is no existing UK standardised FQoL measure to provide this information about this population. \n\nThe purpose of this study is to develop a UK based FQoL measure for families with children with ID and/or autism. The data collected in this study will also enable an analysis of the variables that impact FQoL (i.e., moderators and mediators), such as level of the child’s support needs and parental wellbeing. The questions (items) that will assess FQoL will be generated with families/carers. An online electronic survey containing the new FQoL questions will be completed by participating families/carers and the resulting data will be subjected to statistical analyses to identify which questions/items have sufficient reliability and validity to be used in the final FQoL questionnaire. \n\nParticipants will be recruited from a variety of sources, such as NHS and local authority services, schools and third sector charities. Participation will be voluntary and participants will be asked to complete the survey at home and in their own time. \n\nThe primary outcome of this research will be a UK validated tool to measure FQoL for families with children with ID and/or autism. The tool will support practitioners with their clinical practice to monitor FQoL over time which will enable them to better support the needs of families and their children. A secondary outcome of this research is further evidence about the factors that influence FQoL.\n\n\n
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
20/YH/0198
Date of REC Opinion
29 Jul 2020
REC opinion
Further Information Unfavourable Opinion