The impact of stigma on the psychological health of carers of autistic children Mental and Behavioural Disorders
Conditions
Interventions
There are two arms of this parallel RCT
the experimental group and the control group which will run at the same time. Participants will be randomly allocated to either group via assigning the random numbers from random number tables to the
Sponsors
University of Bedfordshire
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Aged over 18 2. Reside within the county of Bedfordshire 3. Provide care for young children (aged up to 10 years) who are about to receive an autism diagnosis, are currently obtaining a diagnosis, or have received a diagnosis within the past 12 months 4. Have access to the internet to be able to take part in the group sessions 5. Speak and understand English
Exclusion criteria
Exclusion criteria: 1. The child they care for has been diagnosed more than 12 months ago 2. The child they care for is above 10 years of age 3. Participants reside outside Bedfordshire 4. Have no access to the internet 5. Do not speak and understand English
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. The primary outcome measure proposed to measure the preliminary effectiveness of the intervention is the psychological well-being of the participants, measured with the Mental Health Inventory (MHI-5) at baseline, mid-intervention (week 4), at the end of the intervention (week 8) and 6 weeks follow up 2. The retention rate is measured by how many caregivers consented versus how many caregivers completed the intervention and all of the assessments at the end of intervention 3. The willingness to be randomised is measured as part of the baseline data collection by asking participants if they are happy to be randomly allocated to either group, before the intervention commences 4. The consent rate is assessed by comparing how many caregivers were sent the information pack (including consent forms) versus how many consented to take part 5. Reasons for not participating in the study; People who did not consent are asked to provide a reason why they do not wish to consent to take part 6. The feasibility and acceptability of the intervention and outcome measurement tools, assessed using a qualitative focus group after the end of the intervention phase. The participants are also invited to provide their opinions on whether and how the intervention could be refined to increase the likelihood of effectiveness of a future pilot intervention study. 7. The acceptability of the intervention and outcome measures is measured quantitatively using a brief questionnaire at the end of the intervention 8. Initial estimate for sample size calculation for a future main RCT, estimated using pre- and post- means and standard deviations of the primary outcome measure (psychological well-being, MHI-5) | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary measures to measure the preliminary effectiveness of the intervention: 1. Stigma and self stigma, measured using Perceived Public Stigma Scale (PPSS); Perceived Courtesy Stigma Scale (PCSS), Affiliate Stigma Scale 2. Self-esteem, measured using Rosenberg’s 10-item Self-Esteem Scale 3. Self-compassion, measured using Self-Compassion Scale-Short Form (SCS–SF) 4. Positive meaning in caregiving, measured using the 11-item scale devised by Werner and Shulman and in 2013 Self-Blame Scale adapted from Werner and Shulman (2013) 5. Social isolation, measured using Short-form UCLA Loneliness Scale (ULS-4) Measured at baseline, mid-intervention (week 4), week 8 and 6 weeks post-intervention. Both control and experimental group complete the same measures. | — |
Countries
United Kingdom
Contacts
Public ContactAnnemarie Lodder
Outcome results
None listed