Research project
Title: Sharing Value: Developing a web site and print directory of user commended support services for disabled children and their families.
Project timescale: From 01 January, 2000 to 01 June, 2002
(Added to website on: 31 July, 2007 - Date last updated: 31 July, 2007)
Source of funding:
National Lottery Charities Board
Aims: To explore and develop criteria for deciding what are quality services via parents and children consultation groups. To draw up a list of family nominated valued services and disseminate these via the world wide web and a printed directory.
Research designs used:
Evaluation
Study of views/experiences
Methods used to collect data:
Focus groups
Interviews
Validated instruments eg Outcome measures
Questionnaire survey
Observation
Research project description: Consultation groups of parents, children and practitioners (9 groups in total) . Were consulted at key stages throughout the project. Development of 3 postal questionnaires, one each for parents, children and siblings, sent to 15,000 families (approx) from the Family Fund Trust (FFT) database, asking for nominated services. Within the directory, some examples of services are described in greater depth. Families helped to shore-list and FFT Visitors visited these services.
Stages at which the public were involved:
Disseminating research
Prioritising topic areas
Managing the research
Designing the research instruments
(eg questionnaires, patient information sheets)
Undertaking the research
Analysing the research
Description of public involvement in research stages: 1. Developing criteria of 'quality services' - through consultation group meetings. 2. Consultation group members commented and guided researchers on questionnaire design. 3. Consultation group members helped researchers draw up a short list of services. 4. Sample of families (approx 15,000 from UK) were sent postal questionnaires to complete. 5. Consultation group members helped researchers draw up a list of questions for FFT Visitors to ask service providers. 6. Parent consultation group members commented and guided researchers on designing the website.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project: Establishing service quality criteria, consultation groups of children and parents highlighted criteria they valued, differences emerged from the professionals criteria. Parents and children also prioritised different quality criteria. Consultation groups, especially parents, highlighted a number of problems with first draft questionnaires eg. Style, phrasing and as a result questionnaires were changed quite dramatically. This emphasised the importance of separate questionnaires for children and parents. Parents consultation group members piloted the website and highlighted issues of accessibility. The website was altered accordingly.
Evaluating the impact of public involvement in the research:
Details of publications or reports resulting from the research: W, Mitchell. P, Sloper.(forthcoming 2001) " Quality in services for disabled children and their families: What can theory, policy and research on children's and parents views tell us?" Children and Society, probably vol.15, No.4. W.Miachell.P,Sloper, (September 2002) "Quality services for disabled children" Research Works, Social Policy Research Unit, University of York no.2002-02.
Was/is your project user controlled: Not Known
For further information on the project, please contact:
Dr Wendy Mitchell
Research Fellow
Social Policy Research Unit, University of York
Heslington
York
YO10 5DD
wam1@york.ac.uk
01904 433608
Website: http://www.york.ac.uk/inst/spru/
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