Participant Demographic Characteristics
Sociodemographic characteristics of the sample of 50 caregivers and 50 individuals with ASD are presented in Table 1. The mean age of individuals with ASD as reported by their caregivers was 12.4 years (range 2–40 years). Among individuals with ASD, there were more males (n = 33, 66%) than females ASD (n = 17, 34%). Caregivers had a mean age of 42.3 years (range 26–49 years). Most caregivers were female (n = 44, 88%), non-Hispanic (n = 46, 92%), White (n = 30, 60%), and married (n = 26, 52%). Regarding caregiver level of education, more than half of the caregivers reported some college, but no degree (n = 26, 52%), and nearly half of the caregiver sample reported being employed full-time (n = 24, 48%).
Clinical characteristics of the individuals with ASD, as reported by caregivers, are found in Table 2. Most individuals with ASD were diagnosed by a psychologist/neuropsychologist/psychiatrist (n = 23, 46%), or a pediatrician/primary care provider (n = 15, 30%), and the majority received their diagnosis between the ages of two and three years (n = 28, 56%). About half had fluent language (“speaks in full sentences,” n = 21, 42%), and the majority had at least one comorbid diagnosis (n = 32, 64%). Most individuals with ASD (n = 47, 94%) had had no significant changes in their condition in the past month, while three (6%) were reported to have had significant changes (two symptoms improved, one not known). For individuals with ASD still in school, the most commonly reported educational placements included regular classroom (n = 13, 26%) and a self-contained classroom (n = 9, 18%). Other than the higher proportion of females with ASD in our sample, these demographic and clinical characteristics are broadly similar to those of participants commonly reported and seen in clinical trials [25]. Saturation was reached after 38 caregiver interviews (in round 1) and 12 additional caregivers (in round 2) participated in interviews using the revised scale.
ABI content validation
Overall Content Validity
Analysis of the transcripts across items was carried out to determine consistency of responses between caregivers, and confirmation that the item conveyed the intended meaning. Qualitative analysis involved identifying the experiences, description, and perceptions that went into the respondents’ answers.
This analysis was used alongside qualitative analysis of whether respondents indicated an item was understood to determine whether wording changes, example additions, or item removal was appropriate.
The box below shows examples of the “think-aloud” responses for a specific item, “Has difficulty being flexible”, with the example “Has a hard time changing his/her mind”. Responses demonstrate differences in approach, with some participants (example 1 & 2) requiring minimum prompts to “think-aloud” and others (example 3 & 4) where the prompts were used to elicit responses (interview questions are in bold font).
Has Difficulty Being Flexible
Example 1& 2: Participant spontaneously thinks out loud
001-003: Has difficulty being flexible—example, has a hard time changing his/her mind—yes, that is “very often”.
That’s also ( a response option of) “very often,” okay.
001-003: Yeah, she is very in a routine. If anything is out of place, the smallest thing will cause a meltdown. Like she knows right now school is Monday through Friday, she knows that she gets up at the same time every day. Um, in terms of eating right now, that’s always been a little bit flexible, but other than that everything stays the same. So, like when—say, for instance, she didn’t understand summer vacation, when the kids are out of school. She was upset that she couldn’t go to school, because that’s become a routine to her.
022-007: Has difficulty being flexible—has a hard time changing his or her mind. Uh, yeah, that would be “often”. That one’s really straightforward, too, you don’t need to change that at all. These kids are, you know, they just—things change and they have trouble moving with it—that’s the best way I could say it.
Example 3 & 4 Participant requires more prompts to think out loud
001-005: Has difficulty being flexible. Example, has a hard time changing his or her mind.
What would you select for your answer, and why?
001-005: Um, I would answer “never”.
Never. And why is that?
001-005: Um, my son is not really hard to deal with, like when we need to go out, uh, like we need to go out, it’s like right now, then even if he’s still watching TV, most of the time or most of the day he just watch TV, and when I tell him we need to go out, we need to go somewhere, even though he act like he don’t understand, but when I try, start changing his clothes, put his shoes on, he don’t really seem to get upset. He just, um, he just let me take him to wherever.
002-010: Yes, I’m there. Has difficulty being flexible. Um, not really. Maybe once in awhile. I would say “sometimes” again.
Why would you say that? What’s your reason for that?
002-010: Because he, he knows the kind of society that we live in. He knows our day to day lives are constantly changing. What I find myself doing is saying to him, this weekend, I don’t know, we’re singing at the, we sing in church. We’re singing at the 8:00, we’re singing at the 9:30, we’re singing at the 11:00, we’re, you know, I will basically have to tell him what’s going on, or I will tell him when his father is working and where he will be, or if we’re able to go on vacation and where that might be. Um, and I feel as though the more I prepare him and communicate with him, the flexibility is better. So I will have to say to him, I know your violin lesson is on Friday at 4:30, but your teacher, [name removed], needs you to come today at 3:30, and he’ll say but it’s on Wednesday, and I’ll say yes, it’s Wednesday and we need to do it today, so let’s get ourselves together and get over there kind of a thing.
|
ABI Instructions
Participants were asked to comment on their impressions of the overall ABI instructions. Almost all participants that were asked to provide comments (n = 36/37, 97%) stated the instructions were “easy” and provided a good generalized overview of the questionnaire.
Are the instructions clear and easy to understand?
Some participants indicated more clarification was needed to clarify the two rating categories in the instructions. Six participants indicated that the term “dimension” could be changed to enhance understanding.
As a result, the term “dimension” was removed from the instructions, and the description of the “quality” response was reworded.
Recall period
Participants also provided feedback on the recall period of over the past 7 days. All participants who were asked to describe their understanding of the recall period (n = 42) were able to successfully explain it as intended, although there was some slight potential for confusion.
In order to clarify the recall timeframe, after the first round of the ABI interviews, the wording was modified from “over the past week” to “over the past 7 days”.
Response options
Participants were asked a series of follow-up questions to assess general understanding and conceptualization of the response options. For example, most participants (n = 38/41; 93%) stated the response options for both domains were easy and clear and most stated they did not have any suggested changes. For those who had difficulty with the response scale (n = 3/41; 7%), they indicated the option “with support” lacked clarity, the overall options were less clear than the frequency responses and had difficulty in differentiating “with support” vs. “with some reminders.”
Overall response
In round 1 of interviews 67/70 items reached ≥90% understandability across participants. Two items in the SC domain and 1 item in the RB domain were understood <90% of the time. Table 3 shows responses for all items in these two core domains. For the associated domains all items reached ≥90% understandability.
Items with <90% understanding were reworded or removed for round 2. In addition, if follow up comments from caregivers indicated confusion in response or similarity and overlap of items, these items were considered for removal or rewording.
Use of examples
The ABI contains some items with examples, which were included based on quantitative and qualitative feedback in previous rounds of instrument development. Caregivers provided feedback regarding the examples either spontaneously, or in response to a prompt. The overall response to the inclusion and utility of examples was positive. It was also confirmed that some items were appropriate and easily understood without examples. Some caregivers suggested other items for which an example might be helpful. These suggestions were discussed by the scale development team and, where appropriate, examples were added to items for round 2.
Item changes
Items changed as a result of the participant comments are shown in a tracking matrix (Table 4). Changes included rewording of items, where participants indicated wording was confusing (e.g. attends to parts of sentences, shown below) or where follow up comments from participants indicated some differences in understanding from expected meaning. Other changes included the addition of an example or removal of an item. Changes were then presented and confirmed in round 2.
Removal of items
In three cases, an item was removed because of participant difficulties with understanding. When considering removal, several factors were considered, including overlap with other items, comments from participants about suitability of an item for certain levels of verbal ability or age, number of responses at floor/ceiling, and perceived lower ability to detect change.
In three cases, an item was removed because of participant difficulties with understanding. When considering removal, several factors were considered, including overlap with other items, comments from participants about suitability of an item for certain levels of verbal ability or age, number of responses at floor/ceiling, and perceived lower ability to detect change.
For example, “Uses objects repetitively” was removed because of the potential for differences in understanding by caregivers, and its similarity to other items in the domain. The item was combined with another item regarding repetitive and stereotypical behaviors in order to avoid confusion and reduce participant response burden (“Makes repetitive movements, e.g., flapping arms, rocking body, rolling head, spinning or tapping objects”).
“Response to familiar things” was removed due to reported ambiguity by some caregivers. In addition, the high level of endorsement of this item by caregivers in this study along with previous data, may leave little room for change in response to intervention.
The item “Complains about physical problems without a known medical reason” was reported by three caregivers of younger and older minimally verbal individuals as not relevant or applicable to their child and was therefore removed.
Overall impressions