None listed
Conditions
Brief summary
The project aims to test the effectiveness of an interactive, web-based decision aid for parents of children diagnosed with autism via a randomised controlled trial (RCT). METHOD Following interview and baseline administration of outcome measures, participants who are randomly allocated (using a pre-prepared random numbers table) to the Intervention Group will receive the web-based/electronic educational intervention/ decision-aid. Participants in the Control Group will receive usual care (that is, standard information from autism advisors and other professionals as currently occurs. Three (3) months following baseline assessment, outcome measures will be readministered to all study participants, and interviews once again conducted to obtain information about decision-making processes and choices made regarding interventions. On completion of data collection for the trial, parents in the Control Group will be offered the opportunity to receive the educational intervention. PARTICIPANTS 150 parents/ carers of children newly diagnosed with autism will be invited to participate in the trial (N=75 per group). Participants will be sourced from all Australian states and territories, and will be parents (most likely mothers) of a child (or children) who is/are less than 7 years old and who has been diagnosed with an Autism Spectrum Disorder (ASD) within the past 12 months. To account for anticipated attrition, 10 additional participants will be recruited to each group. Participants will be recruited via newsletters and websites of ASD organisations in each state and territory, in addition to early childhood/ special education facilities, and other support agencies for children with autism spectrum disorders. INSTRUMENTS To ensure that the children of participants meet the diagnostic criteria for ASD, parents will be asked to complete a parent report diagnostic tool called the Gilliam Autism Rating Scale (GARS). Demographic data (e.g. age, gender, educational level, household income bracket, length of time since child’s diagnosis)) will be collected for each participant, and a telephone interview conducted before and after the trial to obtain information about which autism interventions had been considered/ trialled and reasons for the selection of various interventions. Health literacy levels will also be measured using the REALM. The primary outcome measure will be the Decisional Conflict Scale (DCS) (O'Connor, 1993 (updated 2010)). It will measure participant’s self-efficacy with decision-making, factors affecting decision-making, and satisfaction levels in relation to decisions made (O'Connor, 1993 (updated 2010)). Because this scale will be used to measure decision-making before and three months following receipt of the intervention, responsiveness to change is relevant. The DCS requires participants to read and respond to 16 items across five (5) subscales (Informed, Values Clarity, Support, Uncertainty, and Effective Decision), by ticking boxes marked Strongly Agree, Agree, Neither Agree Or Disagree, Disagree and Strongly Agree. Secondary outcome measures will be a Likert scale measuring self-efficacy specifically for accessing educational information, and the Parenting Sense of Competence Scale (PSOC) (Johnston & Mash, 1989). This tool contains 16 items across two scales, which address parents' perceived competence, problem-solving ability, capable parenting, value/comforting, and parental frustration, anxiety and motivation. This self-report tool will be used to evaluate parent efficacy and satisfaction before and three months post trial. DATA ANALYSIS Statistical software will be used to calculate between-group differences post-intervention (using either paired t-tests or ANCOVA) and regression coefficients will be used to determine which predictor variables (such as intervention, parental level of education etc) influence decisional conflict (decision-making) as the outcome variable. ADDITIONAL INFORMATION Upon completion of the study, it is anticipated that information regarding this resource, if proven effective in improving parents' ability to make informed decisions, will be distributed by the health professional or health care team involved in supporting parents during and after autism diagnosis. The resource will also be made available freely online. The website hosting the decision-aid will be optimised to ensure that parents seeking information on the internet using frequently used keywords, will find the relevant webpage within the top search results.
Interventions
The intervention being trialled is a web-based interactive decision aid, aimed at helping parents of children newly diagnosed with autism to make intervention decisions. The decision aid is a website, which features a questionnaire, that when answered, will provide parents with a list of 'best fit' interventions for their child based on their responses.
The questionnaire is comprised of eight questions, which cover aspects of autism that parents may wish to improve or address. Each question is
The intervention being trialled is a web-based interactive decision aid, aimed at helping parents of children newly diagnosed with autism to make intervention decisions. The decision aid is a website, which features a questionnaire, that when answered, will provide parents with a list of 'best fit' interventions for their child based on their responses. The questionnaire is comprised of eight questions, which cover aspects of autism that parents may wish to improve or address. Each question is answered by parents indicating on a 5-point likert scale how important it is for them that the characteristics or behaviours described in the corresponding question be improved or addressed. Once completed, the top 5 most relevant interventions will be revealed with links to more information on those interventions. The purpose of the questionnaire is to help parents make better informed treatment decisions, with consideration for available research evidence. The website menus will also provide links to further information about 21 interventions, selected for inclusion on the website for having supporting evidence and for being available in Australia. The interventions selected and described on the website are for children aged less than 7 years who have autism. The website will be accessed primarily by parents and carers of these children. The website also includes information about autism spectrum disorders, how they are diagnosed, and where parents can obtain further information about the disorder and intervention service providers. Participants of the study will be asked to access the website for any length of time and any number of times over a 3-month period. During this period, participants will be contacted once to ensure they are able to access the website and have (or are intending to) view the information on the site.
Sponsors
The University of Queensland
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
0 to No maximum
Healthy volunteers
Yes
Inclusion criteria
Parents of children with an autism spectrum disorder, diagnosed within the past 12 months and aged under seven years. Children must be receiving Helping Children With Autism funding, and live in Australia.
Exclusion criteria
Participants must meet inclusion criteria as described above. The Gilliam Autism Rating Scale - 2 will be used to ensure participants' children meet diagnostic criteria for autism.
Outcome results
None listed