The effectiveness of a parent-held record for disabled children

ISRCTN ISRCTN47132534
DOI https://doi.org/10.1186/ISRCTN47132534
Secondary identifying numbers MCH 14-11
Submission date
23/01/2004
Registration date
23/01/2004
Last edited
22/02/2008
Recruitment status
No longer recruiting
Overall study status
Completed
Condition category
Mental and Behavioural Disorders
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data

Plain English summary of protocol

Not provided at time of registration

Contact information

Dr John Moore
Scientific

Greenwood Institute of Child Health
University of Leicester
Westcotes Drive
Leicester
LE3 0JU
United Kingdom

Phone +44 (0)116 225 2880
Email johnmoore11@doctors.org.uk

Study information

Study designRandomised controlled trial
Primary study designInterventional
Secondary study designRandomised controlled trial
Study setting(s)Not specified
Study typeQuality of life
Scientific title
Study objectivesTo test whether a child health record designed for pre-school children with a disability would:
1. Be used
2. Be valued by carers
3. Change the perception of the health care received by the child
4. Influence the amount of communication between the family and a professional who is seeing their child
Ethics approval(s)Not provided at time of registration
Health condition(s) or problem(s) studiedMental and behavioural disorders: Behavioural disorders
InterventionThe intervention was a parent-held record for the parents of disabled children in which they could record contact details of the professionals seeing the child, the child's medical conditions and any medication and equipment used. A diary section allowed parents and professionals to record the child's progress and programme. There was also information about organisations relevant to children with disability. This was a quantitative individual controlled trial of AB design in which outcomes after six months without the intervention were compared those after a six-month intervention period. The participants were randomly allocated to three groups as follows:
Group 1: compared periods without and with the intervention
Group 2: measured any change without the intervention due to the passage of time
Group 3: estimated any effect due to the assessment after the first period without the intervention in Groups 1
Intervention typeOther
Primary outcome measureAt the end of the study, copies of the records were examined and the number of entries was taken as a measure of their value to the users. The parents also completed a questionnaire about the value of the record. The way families viewed their child's health care was tested by experimental control using a questionnaire before and after the intervention. At the same times, the amount of communication between the parents and professionals was assessed by both parties completing an identical questionnaire about the child; the similarity between their replies was taken to be a measure of communication.
Secondary outcome measuresNot provided at time of registration
Overall study start date01/01/1996
Completion date31/12/1999

Eligibility

Participant type(s)Patient
Age groupChild
SexBoth
Target number of participants99
Key inclusion criteriaThe participants were randomly selected pre-school children in the community who had been notified to the Education Department as likely to have special educational needs.
Key exclusion criteriaNot provided at time of registration
Date of first enrolment01/01/1996
Date of final enrolment31/12/1999

Locations

Countries of recruitment

  • England
  • United Kingdom

Study participating centre

Greenwood Institute of Child Health
Leicester
LE3 0JU
United Kingdom

Sponsor information

Record Provided by the NHS R&D 'Time-Limited' National Programme Register - Department of Health (UK)
Government

The Department of Health
Richmond House
79 Whitehall
London
SW1A 2NL
United Kingdom

Website http://www.doh.gov.uk

Funders

Funder type

Government

NHS Mother and Child Health National Research and Development Programme (UK)

No information available

Results and Publications

Intention to publish date
Individual participant data (IPD) Intention to shareNo
IPD sharing plan summaryNot provided at time of registration
Publication and dissemination planNot provided at time of registration
IPD sharing plan

Study outputs

Output type Details Date created Date added Peer reviewed? Patient-facing?
Results article Results 28/06/2008 Yes No