None listed
Conditions
Brief summary
In Australia, approximately one in ten children meet criteria for a neurodevelopmental condition. Neurodevelopmental conditions (NDCs) include Autism, Cerebral Palsy (CP), intellectual and learning disabilities. Impairments in cognition, communication, perception, and behaviour also frequently accompany both autistic individuals and those with CP. It is also common for children to have more than one NDCs. For example, of the one in 36 children that are diagnosed on the autism spectrum 88% will have additional co-occurring disability, commonly another NDC. Autism is also more prevalent in children with CP than it is in population studies, with studies estimating between 2% to 30% of children with CP also meet criteria for autism. Rates of mental health problems in adolescents with NDCs have also started to be explored. While 14% of all young people in Australia will experience a mental health condition, this compares to approximately 70% of autistic young people, over 40%-46% of young people with CP. However, unlike NDCs, most mental health conditions have the potential to be preventable, reversable or improved. Despite the additional support needs, interventions aimed at promoting wellbeing and mental health in adolescents with NDCs are extremely limited. The Westmead Feelings Program (WFP) was the first therapy program for children with NDCs aimed at improving emotional development skills with a focus on preventing mental illness. The Feelings Program for Adolescents (TFP-A) is the first program targeted at autistic adolescents with co-occurring mild ID and has also included adolescents with more significant communication and learning support needs. Previous studies of WFP and TFP-A report the programs to be feasible and enjoyable, and demonstrate improvements in emotional competence, and an increase in confidence for the parent and teacher in supporting social-emotional development. The present study involves The Feelings Program for Adolescents being delivered in a home-based setting, facilitated by parents. The primary purpose of the study is to explore the feasibility of TFP-A delivered in a home-based setting, and efficacy of TFP-A in impacting emotional competence, social skills, problem behaviours, wellbeing and mental health of adolescents with NDCs. It is hypothesised that parent-mediated TFP-A will be found to be feasible, and will correlate with improvements in outcome measures including emotional competence, wellbeing and mental health in adolescents with NDCs.
Interventions
The Feelings Program for Adolescents (TFP-A) Digital Version was adapted from the Westmead Feelings Program (WFP) by the WFP author group for an adolescent target audience, with a diagnosis of autism spectrum disorder and co-occurring mild intellectual disability (ID).
In this single arm, multi-centre, with-in subject intervention study, TFP-A will be delivered to adolescents with neurodevelopmental conditions (NDCs) who are enrolled in a secondary school and who have been identified as potentia
The Feelings Program for Adolescents (TFP-A) Digital Version was adapted from the Westmead Feelings Program (WFP) by the WFP author group for an adolescent target audience, with a diagnosis of autism spectrum disorder and co-occurring mild intellectual disability (ID). In this single arm, multi-centre, with-in subject intervention study, TFP-A will be delivered to adolescents with neurodevelopmental conditions (NDCs) who are enrolled in a secondary school and who have been identified as potentially benefiting from a social-emotion wellbeing program. Based on previous studies we have conducted in over 65 NSW schools and 8 Aspect Schools, TFP-A will be delivered in either small groups in a clinic setting, or in a home-based setting with the support of a parent. Recent pilot studies of TFP-A with autistic adolescents with a range of cognitive abilities indicated that it was feasible to conduct the program in a clinic and school-based setting, and was beneficial in improving emotional competence in adolescents. However, no such program has been developed to support adolescents with a broader range of NDCs. Furthermore, in the Cerebral Palsy (CP) community, individuals, parents and peak bodies such as Cerebral Palsy Alliance, recognised a need for a similar program for adolescents with motor, communication and cognitive difficulties, such as CP. Based on feedback from focus groups, and in collaboration with research partners with a lived experience of CP, CPA and parents and professionals, an adapted TFP-A program will be developed in 2024-2025. The program will be a parent-mediated program designed to be delivered in a digital format in 2026. The parent-mediated manualised program will provide step by step instructions on how to run support their adolescent child with CP, and will include paper-based and digital-based visual supports and audio-video content. TFP-A consists of 18 sessions, each of 60 minute during, held across the year. It is expected that the program will start in Term 1, 2026 and will be completed by Term 4, 2026. A booster / review lesson will be held in Term 1, 2027. TFP-A is grouped into 3 modules covering 1) identifying and expressing emotions, 2) problem solving and perspective taking and 3) emotional regulation. A booster/review session will be held 3 months after the last clinical session and is a review and consolidation of the material already covered in the program. The booster session will be for 60 minutes. Parents will be asked to complete an implementation checklist during the sessions as a measure of fidelity. In the home-based parent-mediated program adolescents will access TFP-A with support from their parent. In TFP-A lessons, participants will engage in a lesson which includes watching videos, discussing the content of videos and completing worksheets based on their own examples. For example in lesson 1 adolescents watch a video to learn about pleasant and unpleasant feelings, they then have a discussion on different pleasant and unpleasant feelings, followed by completing a worksheet that consolidates their learning. They are then asked to complete a worksheet based on their own example. At the end of each lesson adolescents are given takeaway tasks based on the same worksheet. It is expected that worksheet will require 15 minutes to complete, with the support of a parent / carer in the home environment. In the home-based program, parents attend parent sessions where they present their child's material for group discussion and evaluation. There are consolidation sessions at the end of each module which can provide parents time to support additional learning. There are two versions of worksheets available for facilitators to use, a basic version and a more complex version. All adolescents will be provided with both worksheets in the first module, however based on progress and accurate completion of the worksheet, adolescents will be provided with the worksheet that best meets their learning needs in Module 2 and Module 3 (ie reduced cognitive content). Parents are provided additional support in parent sessions when making this decision. In addition to the adolescent TFP-A, there are also separate online parent groups and online parent content. Asynchronistic online parent program will include videos, written resources and guidance to develop their skills as emotion coaches for their child. There will also be synchronistic opportunities for parents to meet with other parents in either face to face or online sessions, facilitated by TFP-A authors and CPA facilitators. The aim of the parent sessions is also to build parent capacity and confidence in supporting their child's emotional needs in a home and community context. This will include using the strategies and language taught in TFP-A. Parents will be invited to attend a face to face session (or online session if required for geographic, family or general health recommendations reasons). All parents will be provided training on the purpose of TFP-A and their role as an emotion coach. They will be introduced to the online training program and taught how to access the program and the elements covered over the year in TFP-A. Each fortnight over the course of TFP-A (Term 1, Term 2 and Term 3) parents will be asked to complete short online training modules, each one lasting for 10-30 minutes. There are 10 modules in total covering generalisation of skills in autism, emotion communication, recognising emotion body signs, recognising emotion-based behaviour, linking situations, thoughts and feelings, problem solving, perspective taking and a range of emotion regulation strategies. There will also be an additional 6 parent training session for parents in the home-based program. Content will include the role of the parent regarding parent attunement, modelling emotion regulation, mindfulness, parenting teenagers and trouble shooting delivering the program at home. Each online training module will have a learning check with 2-3 questions to assess if a parent has grasped the concepts being taught. Parents will be asked to attend a group training session at the start of each Term to provide them with additional support and opportunity to practice new skills with the facilitator. Face to face or online sessions will be for 1 hour duration. It is asked that parents complete all the online training material and attend the 6 face to face parent sessions. Attendance records will be kept of group sessions and progress of online material will be accessed through the learning management system (LMS). Due to the small sample size, the aim of this study is to explore the feasibility of the each program. The recruitment strategy includes communicating the study through the CP NSW Register. Staff at CPA and in the professional networks of SCHN may also assist in recruitment through approaching families that they believe would be interest in the study. Through the background questionnaire and eligibility assessment, all adolescent participants will be screened for entry to the program.
Sponsors
The Children's Hospital at Westmead
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
10 Years to 16 Years
Healthy volunteers
No
Inclusion criteria
Adolescent participants: • Aged 10-16 years old, • Have a diagnosis of CP and may also have co-occurring NDC (autism and/or Mild ID) • Reported by parents and/or teachers to have social-emotional learning needs that would benefit from a targeted emotion development program. Confirmation of diagnosis will be reviewed by a panel at CHW, and shall include recent medical or allied health reports submitted by parents, and through parent report assessment of current adaptive behaviour and social-emotional development. Parents who are selected for the home-based program will also be required to speak English and be willing to attend TFP-A parent sessions in a clinical setting or via telehealth at a time which is mutually agreed by TFP-A facilitators and to the consenting families. They must also have the capacity and ability to support their child at home in learning TFP-A curriculum and practicing the new emotion-based skills at home and in community settings. Their child will not be attending TFP-A sessions as these will be completed at the family home facilitated by their parent (parent-mediated). The pre-treatment assessments are well-accepted, previously validated psychometric instruments that will be administered the initial assessment for diagnostic purposes and for establishing eligibility in relation to inclusion/exclusion criteria. Assessment of social-emotional difficulties, mental health and adaptive behaviour will be based on parent report using well-accepted, previously validated psychometric instruments.
Exclusion criteria
Adolescent home-based participants: • Moderate to severe mental health issues. As the intervention is a mental health prevention program, if current mental health difficulties of the child are too great or too entrenched 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. It is likely that the mental health difficulties will first need to be addressed by the family and mental health services. Parent home-based participants: • Non-English speaker (speaks a language/s other than English and requires an interpreter to translate the English language) • Parent’s self-reporting extreme levels of mental health difficulties or stress. • Inability to access online platform with adequate internet connection, speaker and camera. As the parent material will include an online component, internet access is required. Parent training program contains content including psychological concepts that are difficult for people to understand if they have difficulties with the English language. If current parent mental health difficulties are too great or too entrenched, it may limit the ability of the parent to engage in the parent training or engage their child in the home-based TFP-A curriculum. As the home-based program will require the parent to be able to engage with teaching and supporting of emotion development skills, high levels of parental mental health difficulty (including depression and anxiety), or extreme levels of stress, are likely to impact the parent’s ability to engage in the program. It is likely that the mental health difficulties will first need to be addressed by the family and mental health services.
Outcome results
None listed