57 Parental experiences with early identification and care 3 Focus group In total, ten parents participated in the focus group discussion. All participants were birthparents (nine mothers and one father) and were native Dutch individuals. The age varied between 37 and 52 years old, with an average age of 43.5 (SD=5.49) years. Their average education was of higher professional/university level. Parents reported on twelve children in the focus group: ten boys and two girls. Most parents shared their experiences with one child diagnosed with ASD. Two parents shared experiences with two children, one of which concerned twins. Children received an ASD diagnosis between the ages of three and six. Eight children were recently diagnosed (average 1;3 years ago), four were diagnosed longer ago (respectively six, eight, nine and eleven years ago). Measures and Data collection Online survey Data collection ran from February 2019 to August 2019. The survey was based on a literature search (Crane et al., 2016) and was designed to fit the population and research questions. The online survey was tested by the authors and pilot tested by a parent of a young child with ASD, matching inclusion criteria. Few adaptations were made after pilot testing. The final version of the survey consisted of demographic questions and six topics. With the aim of the current study, only the first two topics of the survey (initial worries and searching for help) were included in the data analysis. Other topics included: receiving a diagnosis for their child, treatment, child education and overall satisfaction with the healthcare process. The full survey can be found in the Supplementary Materials. Focus group The focus group was organized in November 2019 and was conducted by a research team consisting of one PhD candidate who was trained in conducting qualitative research (MS as hostess), one child and adolescent psychiatry resident (IL as note taker) and one researcher experienced in qualitative research (SK as facilitator). All three were women. Every effort was made into creating a safe environment for all participants to ensure they felt secure in sharing their experience (Tausch & Menold., 2016). Upon receiving verbal consent, the focus group was audio recorded. The note taker and facilitator made a detailed record of nonverbal cues of participants. The discussion lasted approximately two hours and was held on a weekday evening at the clinic. During the focus group, three questions were posed: “When did your initial worries start concerning ASD and the development of your child?” “What was this like: discussing these concerns with others (family, professionals etc.)?” and “What could have been done better in the process from initial concerns to the start of diagnostic assessment?”
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