Flexible scheduling to prevent the development of disabling resistance to change

Lead Research Organisation: University of Birmingham
Department Name: School of Psychology

Abstract

Several neurodevelopmental disorders, including autism spectrum disorder, fragile X and Prader-Willi syndrome are associated with strong difficulties in dealing with changes to routines or expectations ("resistance to change" henceforth). Such resistance to change represents a highly disabling aspect of these disorders because it commonly precipitates behaviour problems that have a major negative impact on the lives of individuals with the disorders and their families.

Evidence from experimental studies shows that this resistance to change is associated with limitations in cognitive flexibility (task switching), which is the ability to think about situations differently depending on changing demands. Furthermore, work on the typical development of cognitive flexibility suggests that - from both theoretical and empirical perspectives - this may be facilitated by exposure to environments with specific characteristics, namely those comprising flexiblility. Finally, our own work with individuals with PWS suggests that exposure to more rigid routines can be detrimental to an individual's subsequent ability to deal with changes, perhaps particularly when this exposure occurs during early school years.

Taken together, this evidence suggests that an intervention strategy which increases flexibility in the environments that children are exposed to during early school years (when cognitive flexibility is developing rapidly), may be effective in preventing the development of disability linked to resistance to change. The present project aims to develop such an intervention strategy capitalising on current best practice, which advocates use of visual schedules to structure environments (to avoid changes that may precipitate contemporary behaviour problems). Thus, the inherent limitations of best practice implied by the evidence outlined above, will also be addressed.

Critically, the present project aims to develop the intervention strategy and an associated implementation monitoring tool, collaboratively with stakeholders to maximise acceptability. Furthermore, the feasibility of implementing the intervention and monitoring; the capacity of the intervention to increase flexibility in children's routines; and the feasibility of the measures needed to evaluate the intervention in future pilot work will be assessed.

The present work represents an essential step in the creation of a new intervention strategy that can prevent the development of disability linked to resistance to change, which is relevant for individuals with several neurodevelopmental disorders. Importantly, resistance to change is associated with particularly high negative impact (most disabling) for many families but is not well addressed in existing prevention approaches. Thus, the present strategy would be the first to systematically target prevention of resistance to change.

The work will enable a future pilot randomised controlled study. The future planned pilot study will evaluate how far exposure to increased flexibility in routines during early childhood - mediated by the presently developed flexible visual scheduling caregiver led intervention - can prevent the development of disability linked to resistance to change, via increases in cognitive flexibility. Since in the present project, the intervention will be developed collaboratively to maximise acceptability; if the outcome of the pilot study suggests its efficacy, this can be immediately followed by a large evaluation, designed to enable the intervention to be used to decrease disability on a wide scale.

Technical Summary

Neurodevelopmental disorders including autism spectrum disorder (ASD), fragile X (FXS) and Prader-Willi syndromes (PWS), are characterised by highly disabling resistance to change.

This resistance to change appears to be associated with specific deficits in cognitive flexibility (task switching). The development of children's cognitive flexibility is sensitive to environmental experience; and our work with individuals with PWS indeed suggests that limited flexibility in routines, perhaps particularly in early school years, may hinder subsequent ability to deal with change appropriately.

We hypothesise that increasing flexibility in children's routines in early childhood will decrease the subsequent development of disability linked to resistance to change; and that this effect will be mediated by gains in cognitive flexibility. We plan to test this hypothesis in a future pilot randomised controlled study (the main study).

In the present work we propose to develop a caregiver led flexible visual scheduling intervention, capable of increasing the flexibility in children's routines. The intervention will capitalise on current best practise, which includes use of visual schedules.

A collaborative design process will be conducted with the parents of children with ASD, FXS or PWS; and with relevant teachers and intervention practitioners. The design will include multiple stages of flexible scheduling prototype development and refinement to maximise acceptability, followed by beta-testing to identify and address primary potential limits to feasibility. A tool for monitoring intervention implementation will be developed in a parallel process.

The feasibility of flexible scheduling implementation; and its capacity to increase flexibility in children's routines; will be evaluated over one month. Planned outcome measures for the future pilot study will be administered and assessed for feasibility.

Planned Impact

1) Caregivers of children with neurodevelopmental disorders who take part in the proposed research, and their children

Depending on the age of the child, some of these individuals may benefit from the educational intervention directly via our future research (the main study and future trials). These individuals may also benefit during the present work from caregivers' increased awareness of the effect of the environment on their child (via the study assessments), which may allow them to develop their own strategies to improve wellbeing. They may also benefit during the present project from the techniques that will be presented in the educational intervention for communicating schedules to children because these methods of communication could be beneficial in other areas.

2) Children with Prader-Willi syndrome and their caregivers who take part in the main study

These individuals may benefit in the ways described above (1).

3) Individuals with neurodevelopmental disorders associated with disability linked to resistance to change, who are not taking part in the main study, and their families

These individuals may benefit from the people with neurodevelopmental disorders developing less disability linked to resistance to change. They may also benefit from improved communication that may be mediated via the techniques included in the educational intervention.
 
Description Public Involvement Fund
Amount £500 (GBP)
Funding ID 2639 
Organisation National Institute for Health Research 
Department Research Design Service
Sector Public
Country United Kingdom
Start 01/2019 
End 04/2019
 
Description Collaboration for intervention development for resistance to change in children with neurodevelopmental disorders 
Organisation Queen's University Belfast
Department School of Social Sciences, Education and Social Work
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team led by Kate Woodcock in Birmingham have led the design of the intervention being developed and the design of corresponding research methods.
Collaborator Contribution Gaia Scerif at the University of Oxford provided expertise in assessment of cognition and behaviour in young children, including those with fragile X syndrome. Sarah Miller at Queen's University Belfast provided expertise in intervention evaluation methodology.
Impact Conference abstracts: NDAS 2018, Autistica 2018, FPWR US 2018, IASSID 2019, Autistica 2019
Start Year 2018
 
Description Collaboration for intervention development for resistance to change in children with neurodevelopmental disorders 
Organisation University of Oxford
Department Nuffield Department of Anaesthetics
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team led by Kate Woodcock in Birmingham have led the design of the intervention being developed and the design of corresponding research methods.
Collaborator Contribution Gaia Scerif at the University of Oxford provided expertise in assessment of cognition and behaviour in young children, including those with fragile X syndrome. Sarah Miller at Queen's University Belfast provided expertise in intervention evaluation methodology.
Impact Conference abstracts: NDAS 2018, Autistica 2018, FPWR US 2018, IASSID 2019, Autistica 2019
Start Year 2018
 
Description Collaboration with engineers for digital intervention design 
Organisation Proper
Country Canada 
Sector Private 
PI Contribution The research team has collaborated with families of children affected by neurodevelopmental disorders and relevant professional stakeholders, to compile specifications for intervention technology that will be acceptable and feasible for them.
Collaborator Contribution Proper software have contributed systems design expertise to the development of the intervention and associated software.
Impact Flexible Scheduling Tool Flexible scheduling gamified approach Yes, the collaboration is with an engineer with experience in designing and programming systems.
Start Year 2018
 
Title Flexible Scheduling Tool 
Description The purpose of the current project is the design of a psychological caregiver led intervention (flexible scheduling). The intervention is being developed in collaboration with stakeholders. A paper prototype has been produced, which describes a digital tool (web-based), which parents, teachers and children access using a mobile device. Aspects of the tool are being tested by families at present. 
Type Therapeutic Intervention - Psychological/Behavioural
Current Stage Of Development Initial development
Year Development Stage Completed 2019
Development Status Under active development/distribution
Impact The intervention has been designed in collaboration with parents and teachers of children with a diagnosis of autism spectrum disorder, Prader-Willi syndrome or fragile X syndrome. It has been designed as a web-based gamified system which comprises of multiple evidence-based components and adheres to current best-practice in behaviour management. Gamification is an increasingly used method for building intrinsic motivation to engage in healthy behaviour, in a broadly accessible way which can be integrated easily into daily life. Design specifications for the intervention have thus been informed by families affected by these three neurodevelopmental disorders. However, our findings to date from the development process suggest that similar requirements are likely to exist for other populations that would benefit from the intervention. For example, children who evidence resistance to change and associated behaviour problems but who have not yet received a diagnosis (they might be on a waiting list for neurodevelopmental disorder diagnostic assessment). Thus, future development of the intervention may have the potential to produce benefits for populations other than those targeted at present. 
 
Title Flexible scheduling gamified approach 
Description The software is a web-based gamified approach designed as part of a training package and early-intervention tool for families of children at-risk of developing resistance to change behaviours. The software has currently been designed. Parts of it will be built in the current project for testing, however full development will require further funding. The software designed guides caregivers in reporting on the baseline levels of resistance to change and flexibility in routines for their child. Individual parameters (i.e. criteria for success and levels of acceptability behavioural responses) can be set to cater for widely varying ability levels and experiences of families. Training elements are integrated into the system so that parents have ongoing implementation support. Rules for progression programmed into the system support parents to systematically introduce variability to their child's routine, whilst maintaining enough environmental structure to minimise challenging behaviours associated with changes to routine or expectations. Information collected by the system is stored such that this is readily available for parents to track progress, and allows children to establish a sense of ownership and achievement to maintain engagement. The system can also track previous success and so can scaffold re-introduction of mastered targets to ensure the effects of the intervention are maintained. 
Type Of Technology Software 
Year Produced 2019 
Impact The software has been designed but not yet fully developed. Parts of it will be built and tested by a small number of families in the presently funded project. Future funding will be required to fully develop the software and make it available for testing and use more widely. 
 
Title Flexible scheduling prototype software 
Description Mobile device based online tool for parents and children to plan their daily routines in a flexible way www.katewoodcock.com/fs/ (Parent login with onscreen keypad: 1QQQQQ; child login with text box: window) 
Type Of Technology Webtool/Application 
Year Produced 2019 
Impact The twelve families who took part in the feasibility/acceptability evaluation of the tool stated that they believed either they or other families would benefit from the tool when it is fully developed. 
URL http://www.katewoodcock.com/fs/
 
Description ASD Support Groups (West Midlands) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact The activity involved speaking at support groups for caregivers and individuals with autism. The support groups are held weekly, facilitated by a parent who works in education and autism advocacy. The meetings provide a platform from which families can support each other and offer advice regarding their child's support needs and challenges. As part of the flexible scheduling project, such support organisations were contacted to circulate information pertaining to the study as a recruitment activity. However, additionally to recruitment, two support groups asked a representative of the research team to attend a meeting to present the study rationale and facilitate a group discussion around the subject matter of the study (i.e. a discussion between caregivers around anxiety, resistance to change behaviour, and temper outbursts). The event generated interest in the study, with families emailing subsequently to register their interest in participation.
Year(s) Of Engagement Activity 2018
 
Description Behaviour Management Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Both Kate Woodcock (Principal Investigator) and Siobhan Blackwell (Research Associate) on the Flexible Scheduling project attended a family conference for individuals with Prader-Willi syndrome and their caregivers. The event was hosted by the Prader-Willi Syndrome Association-UK. As part of the event, the research team were invited to facilitate two workshops on the topic of managing challenging behaviours. The audience included caregivers of children from birth to 16 years as well as members of the charitable organisation. The workshop focused on analysing functions of challenging behaviours, the application of behaviours principles, and the discussion of behaviour vignettes to problem-solve example situations. Principles and insight derived from the flexible scheduling project was discussed throughout.
Year(s) Of Engagement Activity 2018
 
Description Conference inclusive of members of the autism community 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The project was presented at Autistica's inaugural research conference. The conference aims to bring together researchers whose work focuses on the key priorities of the research community, such as challenging behaviours, communication, and mental health. The conference is inclusive of autistic individuals, with many members of the audience having a diagnosis of autism. Interest in the objectives and trajectory of our work was particularly reported by clinicians and engineers.
Year(s) Of Engagement Activity 2018
 
Description Family conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Kate Woodcock (Principal Investigator) was invited to speak at the national family conference of the Fragile-X Society-UK. The event aimed to unite members of the fragile x community and their carers to update them on ongoing research of relevance to community, advocacy, policy, and the use of funds derived by charitable action. Kate's talk focused on research into resistance to change as emotional and behavioural manifestations of change with an update on outputs from the flexible scheduling pr
Year(s) Of Engagement Activity 2018
 
Description Family conference (Holland) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Lecture on developing psychological support strategies to help people with PWS deal with change, The Netherlands Prader-Willi Syndrome Association conference on behaviour, Nijmegen, The Netherlands, October 2019
Year(s) Of Engagement Activity 2019
 
Description Family conference (International) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Invited lecture by Kate Woodcock on developing psychological support strategies to help people with PWS deal with change, at the 10th International Organisation for Prader-Willi Syndrome Family Conference, in Havana, Cuba, in November 2019.

The lecture covered a number of intervention strategies that have been the subject of research by Kate Woodcock's research team. The flexible scheduling intervention developed for the present project was an important part of the presentation.
Year(s) Of Engagement Activity 2019
URL https://www.ipwso.org/conferences
 
Description Family conference (USA) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The Foundation for Prader-Willi Research, USA held their national family conference, which aims to bring together families and caregivers of individuals which have Prader-Willi syndrome. The event hosted a series of keynote speakers and panel discussions covering a range of issues prioritised by the community. Kate Woodcock (Principal Investigator) gave a keynote presentation, which included an introduction to the flexible scheduling project. She also took part in a panel discussion on behaviour management, during which the flexible project was discussed further.
Year(s) Of Engagement Activity 2018
 
Description Interest group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The event was held by the Child and Young People with Learning Disability network within the division of Clinical Psychology of the British Psychological Society. The event offered an opportunity to network and engage with clinicians working with various populations who present with learning disability. It allowed us to gather professional feedback on the potential capacity of the flexible scheduling approach being developed to relieve pressure from clinical services in the provision of early-intervention for challenging behaviours. Feedback provided insight into potential future applications and directions for research and potential recruitment pathways for those activities.
Year(s) Of Engagement Activity 2018
 
Description School Visit (to institution of research) 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact As part of Aim Higher, West Midlands, a member of the research team presented work from the Flexible Scheduling project to GCSE students from two local schools. Aim Higher provides outreach services to improve social mobility by widening participation in higher education.
The talk was one of a series targeting students in their GCSE year who show interest in the sciences. The series aimed to showcase the variety of work offered by the sciences, with our talk forming the human sciences component.
The talk focused largely on research we are conducting to understand resistance to change behaviours across neurodevelopmental disorders. The real-life applications of research were emphasised through discussion of the flexible scheduling project as transcending disciplinary boundaries through our collaboration with engineers in the development of an intervention approach that could potentially be a widely accessible and resource-efficient resource for families to support their children.
Year(s) Of Engagement Activity 2018
 
Description Scientific Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Siobhan Blackwell gave a talk on the progress of the Flexible Scheduling project. The audience consisted of an interdisciplinary group of professionals (medical practitioners, pharmaceutical companies, genetic researchers, psychology researchers). However, the audience also comprised caregivers from the PWS community, including some participants of the Flexible Scheduling project. The event generated feedback from participants on engagement activities, which resulted in the creation of our social media platforms. It also generated interest from other researchers in the area of gamification.
Year(s) Of Engagement Activity 2018
 
Description Scientific Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation by Siobhán Blackwell on the development and feasibility/acceptability evaluation of the flexible scheduling intervention tool at the 10th International Organisation for Prader-Willi Syndrome conference in Havana, Cuba. The conference includes three parallel streams targeting academic researchers, parents/ caregivers and professionals respectively. The presentation was part of the scientific stream but many delegates from the other streams also attended.

Blackwell, S., Zylberberg, A. X., Scerif, G., Miller, S. & Woodcock, K. A. (2019, Nov15) Collaborating with stakeholders in PWS on the development of a "flexible scheduling" early intervention approach designed to prevent the development of disabling resistance to change. 10th International Organisation for Prader-Willi Syndrome Conference, Havana, Cuba.
Year(s) Of Engagement Activity 2019
URL https://www.ipwso.org/conferences
 
Description Scientific Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Siobhán Blackwell gave an oral presentation at the 22nd International Research Symposium for the Society for the Study of Behavioural Phenotypes. The audience comprised academic researchers from several disciplines that have an interest in neurodevelopmental disorders.

Blackwell, S., Zylberberg, A. X., Scerif, G., Miller, S. J., & Woodcock, K. A. (2019, Sep05). Scheduling early intervention approach designed to prevent disabling resistance to change. 22nd International Research Symposium of the Society for the Study of Behavioural Phenotypes, Birmingham, UK.
Year(s) Of Engagement Activity 2019
URL https://ssbp.org.uk/
 
Description Scientific Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Siobhán Blackwell presented a talk at the 16th IASSIDD world conference in August 2018. The conference attracts academic researchers, practitioners and policy makers.

Blackwell, S., Zylberberg, A., Scerif, G., Miller, S., & Woodcock, K. (2019, Aug09). Collaborating with stakeholders on the development of a "flexible scheduling" early intervention approach designed to prevent disabling resistance to change. 16th World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities, Glasgow, Scotland.
Year(s) Of Engagement Activity 2019
URL http://www.iassidd2019.com/
 
Description Social media platforms developed 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact As a means of enhancing engagement with the both the lay and research communities, the research associate co-coordinating the flexible scheduling study set-up a social media presence for the research group across three platforms, including: facebook, twitter and instragram. The platforms are used weekly to promote ongoing research activities, including flexible scheduling. The platforms are used to explain the nature of the collaborative design research process, which is a core part of the flexible scheduling project. Training activities attended by team members are publicised to explain the research context and to generate interest in our work from within the general and student populations. Engagement via these platforms have supported participant retention within the study, facilitated dissemination of research updates to charitable organisations that support recruitment, and have facilitated communication with other professionals across universities, sectors and countries.
Year(s) Of Engagement Activity 2018,2019