None listed
Conditions
Brief summary
Many children on the autism spectrum experience difficulty with toilet training. In Aotearoa, intervention and support for children on the autism spectrum and their families is typically delivered in an individualised/face-to-face format. Moreover, evidence-based behavioural interventions, although often effective, require a significant investment of time, funding, and resources on the part of parents and service providers, in many cases, precluding access to services for those in remote or underserved communities. Internationally, telehealth technologies (i.e., videoconferencing, telemonitoring, and smartphone apps) have been used to deliver a variety of evidence-based interventions to children with autism and their families, however, there is a scarcity of research investigating the effectiveness of telehealth-delivered interventions for a key number of critical health-promoting behaviours, including toileting difficulties, in children on the autism spectrum. Furthermore, there appear to be no studies focused on the prevention of problems in these areas, using either conventional or telehealth methods. Telehealth-delivered interventions might be particularly well-suited to addressing these types of health-related difficulties because the presenting problems frequently occur outside of conventional clinical hours and there is a shortage of trained professionals to address such problems. Consequently, difficulties in these areas must often be managed by parents at home, 24 hours per day, with little or no support or guidance, leading to stress and reduced quality of life. The aims of this research are to (1) investigate the efficacy of telehealth-delivered behavioural interventions for toileting problems in children on the autism spectrum; (2) identify the essential components of effective telehealth interventions for addressing these health-promoting behaviours; (3) identify whether the telehealth approach is perceived by parents to be culturally responsive, acceptable, and beneficial; and (4) assess the collateral benefit of improvement in health-promoting behaviours on a child’s daytime behavior, adaptive functioning, quality of life, and parental well-being. We hypothesise that (1) telehealth-delivered behavioural interventions will reduce the severity of children’s’ toileting problems; (2) any reduction in the severity of problems will be maintained at follow up; (3) parents will use the telehealth technologies effectively and with fidelity and they will be viewed positively by parents; and (4) as target problems improve there will be collateral improvements in the children’s adaptive behaviour and quality of life and parent wellbeing.
Interventions
Study Phases:
Phase 1: Assessment. A clinical interview will be undertaken via videoconferencing to ascertain the safety and suitability of the programme for each participant, and to gather information about the child’s developmental history; family context; toileting problems; and demographic information. This interview will last between 30-45 minutes in duration and will be undertaken by a registered psychologist or post-graduate student who is a member of the research team, under the supervi
Study Phases: Phase 1: Assessment. A clinical interview will be undertaken via videoconferencing to ascertain the safety and suitability of the programme for each participant, and to gather information about the child’s developmental history; family context; toileting problems; and demographic information. This interview will last between 30-45 minutes in duration and will be undertaken by a registered psychologist or post-graduate student who is a member of the research team, under the supervision of the lead investigator. Phase 2: Baseline. Parents will be randomly assigned to a baseline length of 5, 10, or 15 days. Parent-reported diary data will be collected on the frequency and duration of toileting sits and the frequency of successful in-toilet/potty voiding and accidents (i.e., voiding off the toilet or potty). Phase 3: Intervention. Intervention will consist of two sequential sub-phases. Progression through each sub-phase will depend on whether the identified problem has resolved and/or parents’ satisfaction with progress. Intervention sub-phase 1 - parent psychoeducation and online learning modules. Parents will independently engage with web-based, multi-media content, activities, and resources, embedded within a series of modules. Module content will be developed based on existing empirical research and the extensive research and clinical expertise of the named investigators, and empirically-supported interventions for toileting difficulties. Collectively, these modules will form an online parent Toolkit relating to each health-promoting behaviour. It is estimated that it will take parents 1-2 hours to work through each module and they will engage with these modules at their own discretion. This phase will last for four weeks. For parents in the toileting study, Module 1 will provide foundational knowledge regarding central aspects of toilet training, including why toilet training is important and why autism might make toilet training more difficult. Module 2 provide information about preparation for toilet training, including equipment, ways to adapt the toilet area, and how to increase your child’s readiness for training. Module 3 provides strategies and resources such as visual supports that help children with autism to learn new toileting skills and behaviours. Module 4 and Module 5 focus on toilet training procedures, including options for a more gradual or a more intensive approach. Module 6 will cover additional information such as managing setbacks and other problems. Taken together, these modules will provide parents with key information, strategies, and resources to help your child improve their toileting behaviour. Intervention sub-phase 2 - synchronous videoconferencing in small groups (n = 3-5 families/group) with weekly feedback from a specialist. This phase will commence immediately after intervention sub-phase 1. During this phase, parents will partake in small group, weekly, 2-hour video conferencing sessions where they will have the opportunity to pose questions and discuss treatment plans with a specialist (e.g., named investigator or psychologist). The specialist will use assessment information to support parents to select empirically supported interventions and progress will be reviewed weekly within group training sessions. This phase will last for 4 weeks. Intervention sub-phase 3 – synchronous, individualized, parent coaching sessions. Parent coaching will be provided for individual parents during the toileting routine. This live coaching will be provided weekly, for up to one hour, by a specialist who is a member of the research team, for a period of four weeks. Parents will be supported to implement interventions during this time (e.g., use of visual supports, social stories, and/or rewards). This phase will commence immediately following completion of intervention sub-phase 2. Phase 4: Follow-up. Data will be collected for one week, at 12 weeks and 6 months post-intervention, to assess the maintenance of intervention effects. Parents will be asked to record the strategies that they implemented during intervention within the data sheets. Website analytics will be used to assess the frequency and duration of engagement with web-based materials. Attendance at weekly group coaching sessions and individualized coaching will be recorded by the research team. It should be noted that participants can choose to withdraw from intervention at any time. If they are satisfied with their child’s progress and do not wish to proceed to intervention sub-phase 2 or 3 then they do not have to do so. If a parent would like to remain in intervention sub-phase 1 for more than four weeks they will not be able to progress to intervention sub-phase 2, as this is a group coaching phase and relies upon a cohort progressing collectively. If this is the case, parents can continue to have independent site access but will be considered to have withdrawn from the study. There is no ‘readiness’ criteria for progressing through intervention phases that is stipulated by the research team as the levels of support increase across each phase. On conclusion of the 12-week intervention period (the maximum duration of involvement in the study), parents can continue to have independent access to the website, if they choose to do so though they will not be required to collect data beyond the 12 weeks.
Sponsors
A/Prof. Laurie McLay
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Treatment
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
2 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Participantswill include a minimum of 15 parent-child dyads who meet the following inclusion criteria: (1) a formal diagnosis of Autism Spectrum Disorder (ASD) or features of ASD (i.e., awaiting diagnosis); (2) between 2 and 5 years of age; (3) parent-reported toileting problems; (4) absence of a physical/medical condition affecting that may make implementation of a behavioural intervention unsafe and are not being effectively managed; and (5) not currently receiving services in the target domain.
Exclusion criteria
Children will be excluded from the study if they are currently under the care of a paediatrician, gastroenterologist, or other specialist with respect to toileting as these children are likely to have co-occurring medical conditions or difficulties that require a more comprehensive intervention. If in doubt, we will consult with the specialist providing this medical care, to determine the safety and suitability of the programme.
Outcome results
None listed