32319
Identifying Underlying Sources of Distress for Adolescents and Adults with Autism Spectrum Disorders and Other Neurodevelopmental Disabilities
Individuals with Autism Spectrum Disorders (ASD) and other Developmental Disabilities (DD) who have low verbal ability often have difficulty communicating their sources of distress, discomfort or frustration. Often times these individuals communicate their needs indirectly through irritability and disruptive behavior. These behaviors can create a substantial barrier in their capacity to access appropriate medical care, participate in their community, and maintain residence with their parents or other caregivers. To address the needs of this population, medical providers must develop facility in translating observable behaviors to appropriate treatment protocols.
Objectives:
The primary objective of the current project is to convert parent and caregiver social capital (i.e. resources and knowledge) into improved behavioral and health outcomes for adolescents and adults with ASD and/or DD with minimal verbal ability. In addition, this project seeks to improve medical provider efficiency via a carefully designed and sequenced delivery of questions that focus on known behaviors associated with specific psychiatric and medical conditions in this population.
Methods:
The current study reports on qualitative data from six focus groups with 14 parents or caregivers of adolescents or adults with ASD and/or DD. Study participants completed an online assessment that was designed to indicate psychiatric or medical conditions using discreet behavioral indicators. The computer adaptive measure was created to follow a branching logic scheme where positive answers lead to expanded questions on specific topics. Our analysis followed a qualitative data methods outlined by Ritchie and Spencer (1994). Atlas.ti (version 5.1) software was used to organize and analyze the focus group data. The data interpretation plan followed several steps. First, we utilized inductive reasoning and the constant comparative method (Strauss & Corbin, 1998) by systematically comparing parent and caregiver statements within and across focus groups. Then, we focused on cross-group saturation in order to identify perspectives that represented community-wide beliefs among parents and caretakers. By analyzing data across the five focus groups, we were able to assess whether the perspectives that emerged from one group also emerged for the others, subsequently serving as a proxy for theoretical sampling in order to assess the meaningfulness of participant perspectives.
Results:
In the current study, all participants reported positive acceptability of the content of the measure. All participants also reported positive acceptability of the time required to complete the measure. Despite consistent positive remarks regarding the existing content, participants indicated a desire to expand content in several categories (e.g. gastrointestinal, self-injurious behavior, dental) and add categories that were not previously included (e.g. gynecological/menstruation).
Conclusions:
The current project documents the development and initial validation of a measure designed to support medical providers in caring for minimally verbal adolescents and adults with ASD and/or DD. This initial study showed positive acceptability for the content and structure of the question algorithm. While efficiency of the measure was a goal in the initial design, focus group participants called for expanded content in several key areas. This feedback has led to more comprehensive coverage of medical and psychiatric considerations that impact individuals with ASD and/or DD.