Paediatric Assisted Cycle Therapy for Children with Down Syndrome: A Pilot Study for Product Development
Shannon D. R. Ringenbach, Jordan M. Santos, Jordan Stupka, Bryn Gunther, Sujan Parab, Carter Coray, & Kelley Baxter
Arizona State University
Background: Fifty-eight percent of children with Down Syndrome (DS) are not meeting recommendations of moderate-intensity aerobic activity each week. Our results have shown improvements in cognitive, motor, and physical health measures in adolescents and older adults with DS using the Assisted Cycle Therapy (ACT) bicycle, which has a motor that moves the pedals at a fast rate (~90 rpm). This technology will overcome the major obstacles to conventional pediatric exercise because it reduces some of the low motivation and physical limitations of other exercise options.
- Can we modify the adult version of the ACT bicycle to test young children (5-12) with DS and see improvements in cognitive, motor and health measures.
Methods: Two males with DS aged 12 and 5 completed ACT for 20 minutes 2x/week for 8 weeks. Cognitive, motor, and physical health measures were administered prior to and after the 8 week intervention.
Results: Our results show that both participants completed all 16 exercise sessions and our preliminary results show that observationally they both completed more of the tests in cognitive (Tower of London, card sorting, reaction time), motor (Purdue Pegboard, improved grip strength), and physical health (finished 6 minute walk test) consistent with our hypothesis that ACT would be tolerable and improve performance. In addition, we have seen a dramatic decrease in resting heart rate.
Conclusion: Our results are discussed with respect to their future implications for the benefits of ACT for young children with DS. The goal of this pilot study is to provide pilot data for a product development grant in which a commercial Pediatric Assisted Cycle for Therapy (PACT) will be available for young children with Down syndrome so they can receive early benefits for lifelong improved quality of life and independence.
Product Development Shannon D. R. Ringenbach, Shannon.firstname.lastname@example.org
- Exercise at a fast rate can improve motor and cognitive functioning.
- Tandem bicycling may be a viable option for exercise.
- Assisted Cycle Therapy is conducted on stationary bicycles made by Theracycle.
The power of music to change lives - Setting up an Inclusive Choir for Young People with/without additional needs
Jo Bryenton - Makaton Tutor; Rachel Whittaker - Choir Leader; Caroline Hall - Chair of Trustees, North Yorkshire Music Therapy Centre
We believe music is for everyone and the power of music can change people's lives. We wanted to form an inclusive singing and signing choir for young people with/without additional needs in our community. In 2021, three local charities collaborated to run a pilot project to start the choir, with funding from the D'Oyly Carte Charitable Trust.
Due to the Covid pandemic we started the choir online but moved to meeting outdoors as soon as we were able to, and now meet indoors. We meet for an hour on a weekday evening during term time and it's quickly become the highlight of our week!
Our sessions are fun and informal with everyone invited to 'come as you are'. Some members sing, some sign (we use Makaton signs), some do both and some just dance.
The need for mental health and wider community support, particularly following the Covid restrictions, is well documented. The choir engages young people to improve their mental health, emotional resilience, self-expression, communication skills and understanding of diversity.
The project provides a safe and contained space for positive self-expression, where participants can explore and share their ways of expression following their needs and strengths, thus providing the participants with opportunities to shape the activities of the choir.
Members also build relationships with peers as well people from different generations, improve their confidence by practising conversation and prepare for adulthood by learning life skills. We have collected both quantitative and qualitative evaluation and feedback throughout the project, using questionnaires, interviews, and discussion - where appropriate with parents and carers as well as with the young people themselves.
Summative evaluations were conducted at the end of the project. These included not only the experiences of participating but also the impact on their understanding of disability, on their wider activities and on their day-to-day lives.
Quotes from members: "joyful", "feels like a party every week", "heart-warming", "leave on Cloud 9".
Music is for everyone, and music can change people’s lives.
Informal, fun sessions – ‘come as you are’.
Outcomes – self-expression, communication skills, understanding of diversity, building community, self-confidence, practice communication skills etc.
Rachel Whittaker – Rachel.email@example.com
Down Syndrome Ireland's Personal Development Programme
Aoife Gaffney, Head of Employment, firstname.lastname@example.org
Sinéad Flynn, Adult Education Officer, email@example.com
Down Syndrome Ireland provides information, advice and support for students, teachers and families in education, and delivers adult education and employment programmes. One of the gaps highlighted in primary and post-primary education is effective personal and social development programmes which are age-appropriate and accessible for students with Down syndrome. Lack of appropriate social skills, interpersonal skills and boundaries have also been noted as barriers to successful integration in the workplace.
To address these gaps, we created a Personal Development course which is specifically aimed at teenagers and adults with Down syndrome. One element focuses on interpersonal skills for employment, and this was piloted as a module in our Work Skills course. Other modules cover topics such as self-awareness and self-care, boundaries, relationships, growing up, conversation skills, mental wellbeing, sexuality and staying safe. The full course is currently being piloted in 2 DSI branch groups with adults (22 students in total) and 2 post-primary class groups in 2 mainstream schools (6 students with Down syndrome and peers with ID).
Changes in self-awareness, self-esteem, independence and social & conversational skills are being gathered using student feedback, family questionnaires and teacher questionnaires.
Aims: To address gaps highlighted in education and adulthood we created a Personal Development course which is specifically aimed at teenagers and adults with Down syndrome. The programme aims to empower people with Down syndrome to achieve their full potential, develop social and life skills, increase self-awareness, self-esteem and independence, enhance employability, promote inclusion and encourage lifelong learning.
Methods: The course is currently being piloted with 2 adult groups in Down Syndrome Ireland branches with 22 students, and 2 post-primary class groups in 2 mainstream schools, with 6 students with Down syndrome and their peers with ID. Teachers were required to complete pre and post course checklists on range and use of vocabulary for each student. They were also required to complete questionnaires for each unit & provide feedback on the course. Student focus groups were formed at the end of the pilot to collate feedback and mid-pilot discussions also took place with students. Family questionnaires were disseminated at the beginning and end of the pilot to gather feedback and areas of progression.
Results: Increases in self-awareness, self-esteem, confidence, independence, social & conversational skills and vocabulary were reported from teachers, students & families. With other positive comments like new friendships, enjoying the social side of the course, learning about work and enjoyment of the learning materials used. Continued analysis of the course is still underway.
Conclusions/Implications: More time is needed to dedicate to covering each module, as the pilot of the programme was carried out over a short period of time (12 weeks). Topics such as bereavement has been suggested to add to the course, but the nature of this type of course is that topics will continually be added relevant to issues that come up in life. The Personal Development Course has generally been received very well, as there has been no other entire course aimed at learners with Down syndrome that cover these topics as a whole.