Mental health and well-being of parents/caregivers of children recently diagnosed with Autism Spectrum Disorder (ASD) Mental and Behavioural Disorders
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: Current inclusion criteria as of 13/10/2020: 1. At consent, child aged between 2 years 0 months and 15 years 11 months. This is the age-range typically seen by ASD diagnostic teams. 2. At referral, child with a diagnosis of ASD from an NHS professional within the last 12 months. 3. One “index” adult (child’s parent/primary caregiver; must be aged 18 years or over) per child, nominated by family on “intention to participate” basis 4. Child with ASD is a patient of one of the trial collaborating centres Previous inclusion criteria: 1. At consent, child aged between 2 years 0 months and 15 years 11 months with a diagnosis of ASD from an NHS professional within the last 12 months. 2. One “index” adult (child’s parent/primary caregiver; must be aged 18 years or over) per child, nominated by family on “intention to participate” basis 3. Child with ASD is a patient of one of the trial collaborating centres
Exclusion criteria
Exclusion criteria: 1. Adult with insufficient English language to preclude participation 2. Adult with significant learning disability or significant hearing/visual impairment to preclude participation 3. Adult with current severe psychiatric condition to preclude participation 4. Significant current safeguarding concerns within family, identified by referring clinician
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Parental mental health assessed using General Health Questionnaire- 30 at 1-year follow-up | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 12/07/2022: Parent outcomes, measured at baseline and 12-, 26- and 52-week follow-up: 1. Parental ASD knowledge assessed using the Knowledge of Autism Questionnaire – UK 2. Parental wellbeing assessed using Warwick & Edinburgh Mental Wellbeing Scale 3. Parent health status assessed using EQ-5D-5L 4. Parental adjustment to diagnosis assessed using Reaction to Diagnosis Questionnaire 5. Parenting stress assessed using Autism Parenting Stress Index 6. Parenting self-efficacy assessed using Tool to measure Parenting Self Efficacy Family wellbeing and child functioning outcomes , measured at baseline and 52-week follow-up: 1. A parent-nominated self-report measure of family experience and wellbeing developed through parent consultation within previous trials (Autism Family Experience Questionnaire) 2. Expressed emotion as a blind-rated measure of family emotional climate (Autism Five Minute Speech Sample) 3. Child wellbeing assessed using Child Health Utility 9D Index 4. Child emotional and behaviour difficulties assessed using parent- and teacher (blind)-rated Strengths and Difficulties Questionnaire 5. Adaptive functioning assessed using parent(blind)-rated Vineland Adaptive Behaviour Scales _____ Previous secondary outcome measures: Parent outcomes, measured at baseline and 12-, 26- and 52-week follow-up: 1. Parental ASD knowledge assessed using Revised Autism Knowledge Survey 2. Parental wellbeing assessed using Warwick & Edinburgh Mental Wellbeing Scale 3. Parent health status assessed using EQ-5D-5L 4. Parental adjustment to diagnosis assessed using Reaction to Diagnosis Interview 5. Parenting stress assessed using Autism Parenting Stress Index 6. Parenting self-efficacy assessed using Tool to measure Parenting Self Efficacy Family wellbeing and child functioning outcomes , measured at baseline and 52-week follow-up: 1. A parent-nominated self-report measure of family experience and wellbeing developed through parent c | — |
Countries
England, United Kingdom
Contacts
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