Dinosaurs 24/7: Understanding The Special Interests of Children with Asperger's Syndrome - Part 2Mary Ann Winter-Messiers, Maitrise (Universite de Paris-IV, La Sorbonne) How Did We Conduct This Study?This section summarizes the methods used to conduct the study including how participants were selected, demographic information about the participants and their parents/guardians, the development of the interview instruments, and the conduct of the interviews. 10,11 With school districts' permission, we contacted the parents/guardians of children and youth who were scheduled to participate in one of two summer extended school year (ESY) programs for students with Asperger's Syndrome. All of the children and youth had a diagnosis of Asperger's and were on individualized education programs (IEPs) which included ESY participation. Five districts in the Pacific Northwest gave us permission to contact the parents or guardians of their 30 ESY students. We sent letters to all 30 parents/guardians inviting them and their children and youth to participate in our study. Twenty-six of the 30 parents/guardians agreed to allow their children to participate, a response rate of 87%. Of those 26 children and youth who received permission to participate, 24 agreed to be interviewed for a response rate of 92%. Twenty-one participants were male and three were female, and they ranged in age from 7 to 21 years. Twenty-two children and youth were Non-Hispanic White and two were Native American/Alaskan. After completing the interviews, we determined that one of the 24 participants did not have a diagnosis of Asperger's, and her data was excluded. We also invited the participants' parent or guardians to respond to a written survey whether or not they gave permission for their children and youth to participate in the study. Eighteen parents returned their surveys, a response rate of 63%. Fifteen of the 18 parents had some college education or held college degrees. Ten of the 18 parents earned an annual salary of $40,000 or more. Sixteen parents identified as Non-Hispanic White, two identified as Native American/Alaskan, and one declined to disclose his/her ethnicity. Parents reported spending between $100 and $5,000 annually on their child's special interest, including expenses such as related clothing, personal items, toys or objects, books, software, supplies, classes, outings, and overnight trips. The research team designed two sets of questions to be used to collect data. The questionnaire used for the interviews with participants consisted of a set of 14 items with clarifying questions to be used as needed. The items were designed to gather information about the participants' special interest areas (SIAs), the length of time participants had engaged in their SIAs, participants' chosen method of learning about their SIAs, and how much time participants' spent on their SIAs. The second questionnaire was a 40-item survey for parents or guardians who had the option of requesting an anonymous telephone interview instead of completing the written survey. Personnel from the participating districts mailed the surveys to the participants' homes, and parents or guardians returned them in envelopes with no identifying marks so that they were anonymous. Survey themes reflected in the questions included (a) the developmental history of the participant's SIA, (b) family history of similar interests, (c) the amount of time that the student spent daily and weekly in pursuing the interest, (d) the impact of the interest on siblings and family life, (e) ways in which parents supported their children and youth's SIAs, and (f) parents' attitudes and beliefs about their child's or youth's SIAs. The graduate students on the research team conducted all of the interviews under the supervision of the authors. The interviewers worked in teams with one interviewer responsible for conducting an interview with a participant while the second interviewer was responsible for monitoring time limits, preparing forms, running the tape recorders, and taking field notes. The members of an interview team traded roles after each interview. Interviews lasted for 20-25 minutes. After all of the interviews were concluded, the research team provided an ice cream party for the participants and for the ESY program staff. Analyzing the Children's InterviewsWorking in teams, we transcribed all of the interviews and then coded the transcripts for themes. We identified 75 sub-themes such as specific types of strategies participants used to learn about their SIAs, including reading about their SIAs, researching online or at a library, talking to experts or exchanging email with professionals in their SIAs, watching videos, or taking classes relevant to their SIAs. We organized these 75 themes into related groups, and in teams of two, the researchers wrote memos, or series of paragraphs, that paraphrased the essential ideas from each grouped theme. Concurrent with this activity, interview field notes and parent surveys were also transcribed. The research team discussed this data and how it impacted, supported, or contradicted the content of the interviews. Throughout each step of the research process, team members exchanged their work to critique the accuracy, quality, integrity, reliability, and validity of each person's work. No evidence-based conclusions were decided upon until team members agreed that the conclusions accurately represented the data to the best of our ability. Continues in Section 3:
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