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Adapting screen-time management guidelines into individualized behavioural programs for families of children with autism
Project end date: Ongoing project
We are recruiting families of children aged 5 to 12 years old with autism spectrum disorder.
About the study:
Screen-based technologies such as television, computers, video games, tablets etc. have become standard tools in education, health, recreation, and social contexts for children with autism. Managing screen time can be challenging for any parent, but particularly for parents of children on the autism spectrum. The research team recently developed guidelines for famililes and children with autism around managing screen time that are freely available as a website. Now, they are looking at how to turn these guidelines into a behavioural program that families can use, supported by a behaviour analyst.
Contact: [email protected]
Protocol: Developing an innovative data-based screen-time management intervention for children with autism: a feasibility study
Screen-based technologies such as television, computers, video games, tablets, smartphones, and online social networking, have become standard tools in education, health, recreation, and social contexts for children with autism spectrum disorder (ASD). Autistic children are at higher risk of developing problematic screen-use and increased sedentary behaviour compared to typically developing children. Managing screen-time for children with ASD has become an urgent issue for families and clinicians and has raised concerns about the health and behavioral risks as well as a need for interventions to guide healthy screen-time. To address this challenge, our clinical-research team developed guidelines based on expert consensus that address screen-time management of autistic children, focusing on screen-time content, timing, and red flags. The guidelines are accessible as a free electronic resource for families and clinicians (https://asdtechnology.osot.ubc.ca.octosa.ca/home.html). In the present study, we will develop these guidelines into a best practice framework for families and test the feasibility of its implementation as an intervention delivered by behaviour analysts, using the Living Lab at Home (LLAH) platform to evaluate the real-world impact of the intervention. The overall goal of the intervention is to support families in reducing screen-time, improving quality of screen-time within the parameters of the family’s goals, while increasing physical activity.
The proposed study builds on three key values that emerged from the initial phase of LLAH engagement with families and their children living with autism and other developmental and medical conditions. These are: (1) Flexibility and customization: home-based data collection occurs in the context of existing activities and responsibilities that requires the adaptation of methodologies matched to specific child needs. We will integrate feedback from families with lived experience of autism in designing the study methods. (2) Reciprocity: mutual benefits to both researchers and participants results from effective community-based research. To ensure reciprocity, children and their families will be involved in all aspects of study design (e.g., selecting their own goals/outcome measures) and will be able to access their own data, summarized in visual form, at the end of the study; (3) Opportunity and accessibility: home-based data collection can address barriers to accessibility of research participation. Children and their families will be offered flexible adaptations to the research protocol (timing of data collection, etc), to ensure opportunities for diverse families to be represented in research. There are several in-home data collection tools available, but few have been tested in populations of children with complex medical and/or developmental needs. In this project, we examine the use of three different modalities of data collection to understand everyday behaviors.
Design. This feasibility study will use a repeated measures design (e.g. EMA, accelerometer) comparing baseline measures with post ‘intervention’ measures, where each child serves as their own control. This design focuses on intervention and measurement feasibility. We will recruit 10 families who (i) have a child diagnosed with autism (age 5-12 years), (ii) are connected with a behaviour analyst through East-Van Behaviour Analysis Ltd or with the Pediatric Psychiatry Clinic at BC Children’s Hospital, (iii) who the family and behaviour analyst identified screen-time use as an intervention goal (e.g. not giving up other activities, ability to reduce screen-time, preoccupation with gaming) and (iv) consent to engage in the intervention and participate in the study.
Consent and assent. Consent and assent (where communication is possible) will be obtained from children and parent/caregiver prior to commencing the study. See RISe application for further details. Once a family has expressed interest in participating in the study, a member of the research team will schedule an introductory zoom meeting to discuss the details of the study. Following this meeting, the family will receive a link to fill out their online e-consent.
Orientation. Once the family has consented, the research team will contact the families to arrange the courier delivery of the ‘Living Lab at Home’ kit, which will contain instructions and materials for activity monitor and smartphone app use for data collection. Children/parents will be contacted via phone call/email to ensure they received the kit, and to check if there are any questions. If required, the family will be oriented to procedures in accordance with the instruction manual. The research team will remain available by phone, email, or video call to answer questions or trouble-shoot.
Pre-intervention entry questionnaire. Before starting the intervention, families will fill out a pre-intervention questionnaire via REDCap. This questionnaire will include information on demographic information (age, diagnosis, gender, ethnicity, etc.), level of household chaos, autism phenotype etc. See attached documents in section 9 of the ethics application.
Data collection. Data will be collected for 7 days before beginning the intervention and 7 days following completion of the intervention. The participating children and families will engage in the following at-home data collection methods:
• Smartphone-reported Ecological Momentary Assessment (EMA): EMA will be administered in the morning, afternoon and end-of-day each day. This will be done via pre-programmed text-message prompts sent to their smartphone with a link to complete a few short questionnaire items on REDCap, a smartphone-friendly interface. Questions will ask about the child’s mood and emotions, general behaviour, screen-time behavior (amount of screen-time consumed, what children are doing while on a device), parental stress, sleep, and any additional family-identified outcomes of interest related to their specific goals. This will take about 5-10 minutes each time, 3 times a day, for a total of 15-30 minutes a day.
• Physical Activity (PA) Monitoring: The child will be asked to wear an activity monitor each day to assess physical activity and rest/sleep during that daytime. This monitor keeps track of physical activity but does not track location. The activity monitor will be an ActiGraph GT9X Link wearable device, and can be worn on the waist, non-dominant wrist, or leg, depending on each child’s preference.
• Screen-time use: Duration of screen use will be collected objectively by receiving screenshots sent by the families of their child’s device-generated reports of daily screen use.
Intervention. Two certified behavioural analysts will work with the families and children with the guidance and supervision of Katie Allen, East-Van Behaviour Analysis Ltd clinic director and Board-certified behavioural analyst. To ensure equity, we will be providing compensation for the behavioural analyst directly; hence, all families will have access to the intervention regardless of financial/insurance situation. The behavioural analyst and the family will first identify post-intervention long-term objectives (e.g., reduce overall screen-time hours) and several interim short-term objectives (e.g. address specific times throughout the day). The behavioural analyst will create a 6–8-week behavior intervention plan for the parents to carry under their support. The implementation of the behavioral plan will be individualized based on family goals and may include strategies such as differential reinforcement, behavior contracting, visual supports, and functional communication training. The parent and the behavioral analyst will conduct ongoing evaluation during the intervention to determine if any modifications are needed throughout.
BA feedback survey. Every two weeks of the intervention, BA’s will receive a REDCap survey asking them for feedback on their experience with the screen-time website content, visuals, accessibility. This survey will also ask the BA’s for other general feedback about the intervention (challenges faced, strategies that worked well etc.).
Post-intervention questionnaire. Following the intervention, families will fill out a post-intervention exit questionnaire via REDCap. This questionnaire will be the same as the pre-intervention questionnaire, but will exclude questions on demographic information.feedback Interview. After the intervention and data collection period, using established methods for determining feasibility and acceptability, caregivers with their child will be asked to engage in a brief (10-20 minute) semi-structured interview via videoconference (Zoom) with a researcher. We will capture qualitative reports of barriers, facilitators, and suggested changes, as well as quantitative ratings of satisfaction, perceived burden, interference, motivation and acceptability. These data, coupled with objective data regarding data completeness, time completing questionnaires, participant retention, technical difficulties, adverse events, etc. will be used to create recommendations for future research using these methods and screen-time management guidelines.
Feasibility and acceptability of the intervention will be established by using descriptive statistics to examine rates of recruitment and retention, rates of adverse events, completeness and quality of data collected, technical issues (e.g., barriers to the use of the smartphone-reported questionnaires and accelerometer). Thematic analysis of interview data will be used to determine families’ experiences of the intervention and perceived barriers, facilitators, and satisfaction.
Ethics & Privacy considerations
This study will meet the highest ethical standards as mandated by the UBC CREB. In the event where tensions exist between participant preferences and REB standards, we will initiate an iterative consultation process to explore and resolve the issues.
The impact of this study is twofold – first, it will impact our understanding of how to facilitate implementation of the screen-time guidelines into a behaviour analyst-facilitated intervention for families of autistic children. This is expected to provide the foundation for larger-scale efficacy and effectiveness trials in the future with the goal of improving child and family function and quality of life by managing screen-time. Second, it will impact our understanding of how to conduct intervention studies with flexible, personalized micro-longitudinal data collection in the natural home environment. This has implications for the conduct of future clinical trials, increasing the ecological validity and accessibility of intervention research beyond the focus on screen-time.
The proposed study, building on the established LLAH and an existing team of experts on screen-time and ASD, will empower children and their families to become partners in health research and offer novel methods to promote a critical aspect of healthy brain development (i.e., appropriate screen-time use). Determining screen-time guidelines and applying the methods of the LLAH offer broad opportunities for enhancing innovative developmental research for children and their families.
In this study, families of children with autism spectrum disorder will be asked to try an individualized screen time management behavioural program for 6-8 weeks with specific screen time goals that are important to the family. During one week at the start and one week at the end of the program, families will measure their child’s emotions, behaviours, physical activity, screen time at home. This will involve the use of questionnaires administered via smartphones as well as wearable devices to track activity levels throughout the day. At the end of the study, families will be interviewd about their experience.
By participating in this study, families will have a chance to help future familes naviagte screen-time challenges. In addition, participating familes will receive up to $200 in gift cards to thank them for their time.Posted on October 17, 2023