Principal Investigator: Deborah Bilder
Keywords: Autism Spectrum Disorder , Developmental Disorders , Mental Health Care , Caregiver , Communication , Technology Department: Psychiatry
IRB Number: 00111975
Specialty: Psychology, Clinical
Sub Specialties:
Recruitment Status: Not yet recruiting

Contact Information

Chella Palmer

Simple Summary

The purpose of  this study is to develop a common language among parents/caregivers of individuals with autism and developmental disorders (Aut/DD) to support access to medical and mental health care in their community.  This proposal intends to develop an innovative, technology-driven concept for improved service delivery that promotes parent and caregiver social capital (e.g. knowledge) among medical service providers in the community. Through the implementation of focus groups, we will use the exemplars provided to build an interactive Health Bot technology to support parents and caregivers as they communicate with providers.

Detailed Description

Our design experiment will consist of two phases. Phase 1:  (1) conduct focus groups to investigate the content and features of discreet behavior patterns reported by parents, caregivers of individuals with Aut/DD and creating a taxonomy of behavior patterns that align with known medical and mental health disorders, (2) designing a preliminary decision matrix based on relevant theories within a computerized interface and convening an expert panel to refine content based on their expertise and subsequently refine content and the technology of interface with further tool modification based on this feedback, and (3) conduct focus groups to query the acceptability, clarity, and relevance of the questions and receive feedback on the results provided by the this tool. The tool will be further modified based on this feedback such that a beta version of the tool will be ready for Phase 2: Pilot study.Phase 1, Part 1: Focus Group to Development of Content and TechnologyEach participant group (e.g. parent, caregiver, individual with Aut/DD, and provider) shall be invited to participate in group-based “focus groups.” We will conduct focus groups to (1) assess of parent, caregiver, individuals with Aut/DD, and providers’ thoughts and ideas about how parents and caregivers can contribute to the assessment of irritability/problem behavior and (2) observe existing parent/caregiver interactions with providers to determine the most effective use of parent/caregiver expertise.   Interview questions will focus on parent, caregiver, individual the Aut/DD and provider ideas, thoughts and perceptions on discreet behavioral patterns that cause distress in the home and community.Phase 1, Part 2: Preliminary Content and Technology DesignFollowing Phase 1, Part 1 the preliminary critical elements for the design of the content questions will be developed into a prototype of autism virtual interface technology. Phase, 1 Part 2 will have five primary goals: (a) development, (b) expert panel (c) revisions and refinement. Initially, using data gathered above, the content organization and technological delivery method will be established.Phase 1, Part 3:  Focus Group to Field Test Content and DesignFollowing revisions to the content and technology, we will perform a field-based testing with focus groups using the refined content and technology.  These focus groups include unique parents/caregivers, unique individuals with Aut/DD and language, and unique medical providers. Participants will be identified and consented to participate. As with the first set of focus groups, information and feedback gained through participants will be used to assess feasibility and modify the tool further.  Phase 2, Pilot StudyWe will recruit parents and caregivers of adolescents and adults with Aut/DD and the affected individual with Aut/DD to participate in the pilot study.  This study consists of (1) administering the tool developed above to the parent/caregiver and (2) administering measures to the parent/caregiver and individual was Aut/DD that are established in-person tools for evaluating the presence of medical and psychiatric comorbidity, intellectual functioning, and adaptive functioning.   Pilot Study Measures1. Mini PAS-ADD -- The Mini PAS-ADD is a semi-structured interview designed to assess mental health conditions in individuals with developmental disabilities.  Research has found this to be a valid and reliable measure for diagnosing individuals with Aut/DD2. Wechsler’s nonverbal test: The Wecheler Nonverbal Scale of Ability (WNV) is an individually administered test of intellectual ability. The standard battery consists of four subtests that yield a reliable indicator of general intellectual ability.3. Vineland Adaptive Behavior Scales, 3rd Edition -- The parent/caregiver form of the Vineland-3 assesses levels of adaptive behavior across communication, daily living skills, socialization, and motor skills domains. The test yields the Adaptive Behavior Composite score, characterizing overall adaptive skill level.

Inclusion Criteria

1. Parents. For the purposes of this study, a parent is defined as biological relative or someone who has legally adopted the individual who is responsible for the medical care of that individual. This category may include a biological mother, father, grandparent, step parent, or other individuals of similar status.

2. Caregivers. A caregiver, is defined as an individual who is not biologically related or legally assigned to oversee an individual with Aut/DD’s medical care, but has significant contact with the individual and has extensive experience observing the individuals’ behaviors. This category may include residential care technicians, day program assistants, job coaches, or other individuals of similar status.

3. Individuals with Aut/DD. Individuals with Aut/DD are defined as individuals who have received a diagnosis of an autism spectrum disorder (ASD) or other developmental disability (DD) from a physician, psychologist or school psychologist. Participants in this group will be 13 years or older, and will include both sexes.   

4. Providers. Providers are defined as licensed medical care providers. This category may include licensed primary care physicians or mid-level care providers such as physician’s assistants, nurse practitioners, licensed vocational nurses, or other individuals of similar status.

5. Expert panel. A panel of Pediatricians, Psychiatrists, Behaviorists, and Psychologists with expertise in the examination and interpretation of discreet behaviors associated with specific medical and mental health conditions will be recruited by the PI (Bilder) and co-PI (Davis) through their professional network on national experts.

Exclusion Criteria

Individuals who cannot communicate in English are excluded.


Participant Reimbursement

Each focus group participant will receive a $50 gift card.Each participant that completes an in-person assessment will receive a $50 gift card. This means that the parent/caregiver and the individual with Aut/DD will each receive a $50 gift card.Each Expert Panel member will receive a $250 gift card.