None listed
Conditions
Brief summary
One in 100 children is diagnosed with Autism Spectrum Disorder (ASD). Up to 70% of children and adolescents with Autism also experience mental illnesses including anxiety and depression. In addition to the impact of Autism on individuals, the mental illnesses they suffer from are of at least the same severity as that of their disability. However, unlike Autism, mental health problems are reversible and preventable. While approximately 40-50% of adolescents with Autism also have an Intellectual Disability (ID), there is very little research or evidence based programs aimed at this vulnerable population that aim to promote mental health, emotional development and social skills. For adolescents with Autism and an intellectual disability there is no intervention promoting mental well-being. The Westmead Feelings Program (WFP) is an innovative autism specific program developed and researched by psychologists at the Children’s Hospital at Westmead. It is a group based program consisting of 3 modules and a booster session (16 sessions in total). Previous implementation research on the WFP has established the effectiveness of emotion-based learning for primary school-aged children on the autism spectrum, with and without an intellectual disability, and adolescents without an intellectual disability, both in school and clinical settings, in improving emotions competence and reducing symptoms of mental disorder. The aim of this study is to address a current gap in intervention, by developing an adaptation of the Westmead Feelings Program for adolescents with autism and mild intellectual disability, to be piloted in a clinic and school based setting. This study is divided into three parts: Part A: Literature review and development of WFP adapted for adolescents with autism and mild intellectual disability. Part B: Explore and co-design the content in the adapted WFP in focus groups with target population participants (adolescents, parents, educations and other professionals) and explore the adapted WFP feasibility. Part C: Adapted intervention pilot across two settings (clinic setting and a school based setting) – to assess the participant experience, feasibility, barriers to successful implementation and explore whether there are improvements in adolescent well-being, social skills and emotions competence over time, concurrent with using adapted WFP. It is expected that the study will confirm adequate positive experience, feasibility and improvements over time concurrent with using the WFP adapted for adolescents, which may warrant further feasibility and acceptability testing of the adapted WFP in a larger study.
Interventions
This study is a multi-centre intervention study based in a clinical setting and a mainstream school, support unit class.
Westmead Feelings Program 1 (WFP1, Ratcliffe et al. 2017) is the first therapy program for children with ASD/ID aimed at improving emotional intelligence and emotions competence with a focus on preventing mental illness. WFP1 teaches children with ASD/ID skills in emotions understanding, perspective taking and problem solving, and emotions management. Parents and teachers are
This study is a multi-centre intervention study based in a clinical setting and a mainstream school, support unit class. Westmead Feelings Program 1 (WFP1, Ratcliffe et al. 2017) is the first therapy program for children with ASD/ID aimed at improving emotional intelligence and emotions competence with a focus on preventing mental illness. WFP1 teaches children with ASD/ID skills in emotions understanding, perspective taking and problem solving, and emotions management. Parents and teachers are delivered sessions to provide them with strategies to scaffold learning in home and school environments. Previous studies have shown the effectiveness of WFP where children with ASD showed significantly improved emotions competence and reduced mental health symptoms both post treatment and at 6-month follow-up (e.g. Ratcliffe et al., 2014; Ratcliffe et al., under review). However, in those studies, WFP was delivered to children. Given the potential benefits to adolescents and the need for programs that can be implemented for young people on the spectrum who also have a mild intellectual disability, this study aims to explore the lived experience of adolescents with Autism and mild ID, their emotional and social needs and to develop an adaptation of the WFP1 to be trialed in a clinical and school based pilot study. WFP1 is a manualised program which consists of 16 group session of 60-90 minute duration each. The sessions involve discussion, teaching of new skills, video modelling, role play and completion of worksheets. Evidence based autism support strategies such as the use of visual supports and positive behaviour support are utilized in the delivery of the program. There are 3 modules of 5 sessions each and 1 booster session at 6 months follow up. One module will be conducted per school term (for the clinical trial - Term 2, 3 & 4 in 2018; for the school trial Term 1, 2 & 3 in 2019) with weekly session followed by a break between school terms. The program content teaches adolescent participants about their feelings (eg happy, sad, angry and worried), perspective taking, problem solving and emotional regulation strategies to assist them when they feel not so good emotions. The program will be delivered by the researchers who are all psychologists or a social worker. They have each had over 10 years working with young people with autism and intellectual disabilities. One researcher shall attend the sessions as an observer to make notes regarding program content and adherence to the program. A checklist of the activities to be conducted at each session shall be created to assist the facilitators in implementing the program and for the observer to use to assess fidelity. At the end of each session the researchers shall review the checklist and make adjustments for the next session if required. Clinic Pilot - There will be 3-6 adolescents in this pilot study. Adolescent participants must have a minimum of a phrase level of expressive verbal communication skills and a minimum ability to follow short simple sentences and instructions. Information regarding communication skills and social skills will also be collected through a background information questionnaire to parents and adolescents. Throughout the study, questionnaires will be used to collect data on the variables of interest and will be completed by adolescent, parent and teacher participants. School based pilot - Based on previous studies we have conducted in over 60 NSW schools, the WFP1 adapted for adolescents school-based pilot will be delivered in one classroom group as part of the normal PDHPE curriculum. Many support unit classes have students with a variety of support needs, including emotional, intellectual and physical impairments. All members of the class will be invited to attend the WFP1 adapted for adolescents sessions. Students who attend but do not have Autism or an intellectual disability will also be asked to consent to participating in the study. The class teacher will also be invited to attend the WFP sessions and consent to being a part of the study. Questionnaires will be used to collect data on the variables of interest and will be completed by adolescent, parent and teacher participants. As part of both the clinical and school trial, parents will also be invited to attend 3 WFP parent information sessions (at the beginning, at the end of the 16 sessions and at 6 months follow up). The sessions will be held by the researchers (psychololgists and/or social worker). During WFP sessions, questionnaires will be completed by adolescents on four occasions (during the final sessions of WFP Module 1, Module 2, Module 3, and the Booster Session) to maximize the reliability and validity of adolescent self-reports.
Sponsors
The Children's Hospital at Westmead
Study design
Allocation
Non-randomised trial
Intervention model
Other
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
12 Years to 16 Years
Healthy volunteers
No
Inclusion criteria
Adolescent participants: Adolescents eligible to participate in the Clinic pilot of the adapted WFP study will be 12-16 years old with a diagnosis of ASD and IQ between 50 and 75. Confirmation of diagnosis will be through assessments conducted by staff at Children's Hospital Westmead, Department of Psychological Medicine using the ADOS2, SRS, ABAS3 and WISC5. As indicated on the parent background information questionnaire, adolescent participants must have a minimum of a phrase level of expressive verbal communication skills and a minimum ability to follow short simple sentences and instructions. All participants must speak English and be willing to attend the clinic sessions. The Support Unit selected for inclusion in the adapted WFP school based pilot will be selected through communications with the NSW Department of Education, Learning and Wellbeing Officer, who will recommend one appropriate high school with a suitable support unit class. The selected class will be in a mainstream (regular) school and may also include students that do not have ASD and/or Mild ID. For the purpose of this study the recommendations of the Learning and Wellbeing Officer will be of a Support Unit that is comprised of at least 4 adolescent students (aged 12-16) that have ASD and Mild Intellectual Disability all of whom have parental consent to participate in the study. Adolescent participants: Adolescents eligible to participate in the school based pilot will be aged 12-16 years old and attend the Support Unit class. Once consent is given, the school counsellor will review student files to confirm a previous diagnosis of ASD and IQ between 50 and 75. Confirmation of severity will be through ABAS-3 and SRS assessment completed by parents. Parents and teachers will provide feedback on the adolescent participant’s expressive and receptive communication skills as well as outcome measures. The school based pilot is a whole classroom intervention with students allocated to classes based on a range of disability criteria. It may be that students with an IQ below 50 and above 75 or students without an ASD diagnosis are members of the class invited to participate. These students will be also invited to participate in the research project and class sessions. Given adolescent participants will be recruited from one class taught by one class teacher, it may be that the burden of the teacher completing questionnaires on all participating students is too great to allow for participation and quality data collection. The Principal Information Sheet states that educators who are familiar with participating adolescents to the extent that they are able to reliably report on their emotion and social skills can complete questionnaires for this study. This may be a class teacher, teacher’s aide, Assistant Principal, or Well-being Coordinator. Note: All parents of students in the support unit class will be invited to consent for the research study, involving the collection of data relating to the adapted WFP. If parents of the school pilot do not consent for their child to participate in this research study, their child will still receive the adapted WFP. Data will not be collected on non-consenting participants.
Exclusion criteria
In the clinical pilot adolescent participants who are reported to have high levels of reported challenging behaviour, high levels of attention difficulties, are non-verbal (or very little verbal communication) and have been previously reported to have moderate to severe mental health issues will be exclude from the trial. WFP is delivered in a group format in a clinic setting which requires participants to be comfortable in settings where there is a level of verbal communication required. As the WFP is a mental health prevention program, if current mental health difficulties are too great it may limit the ability of the participant to participate in the program or benefit from the skill building elements of the program when delivered in a group format in a clinic setting.
Outcome results
None listed