DOI: 10.3886/e183381v1
title: PArticipation in Rural Settings to Engage in Communities (PARSEC)

description: This project assesses the impact of PArticipation in Rural Settings to Engage in Communities (PARSEC), an intervention for families of young adults with autism living in rural areas to increase community participation. Approximately 27,000 individuals with autism reside in a rural community in Pennsylvania. Individuals living in rural communities often experience multiple barriers to community participation. Recent data assessing community participation in young adults with autism demonstrated significantly lower rates and variability of community participation in comparison to same-age peers without autism. Participants will enroll in PARSEC for a minimum of 3 months and up to 12 months. PARSEC is assessed to determine whether participants report higher number of days participating in community activities and more variation of community activities as compared to baseline. Quantitative analyses are used to assess two primary outcomes (e.g., days of community participation, number of community participation activities) from self- and caregiver-report questionnaire. Qualitative analyses are used to assess for satisfaction with the intervention and identify barriers to engagement.
description: Not applicable
description: Response Rates: 15 participants with ASD between the ages of 18-40-years-old who were able to self-report and were living in rural communities were enrolled in PARSEC. 12 continued to Module 2 (completed 24 weeks of the intervention). 7 continued to Module 3 (completed 36 weeks of the intervention). Finally, 3 continued to Module 4 (completed 48 weeks of the intervention).
description: Presence of Common Scales: Demographics form (i.e., age, race/ethnicity, gender)Social Responsiveness Scale, Second Edition (SRS – 2, other report version)Motivation for behavior change questionnaireAttitude QuestionnaireAttendance (i.e., number of intervention weeks completed)Closure surveyUniversity of Rhode Island Change Assessment (URICA)Internalized Stigma of Mental Illness-9 (Adapted) (ISMI-9)Intolerance of Uncertainty (IUS-S)Mini Social Phobia Inventory (SPIN)PROMIS Depression 4aPROMIS Fatigue 4aPROMIS Sleep Disturbance 4aPROMIS Sleep Related Impairment 4aPROMIS General Self-Efficacy 4aPROMIS Satisfaction with Participation in Discrete Social Activities 7aPROMIS Satisfaction with Social Roles and Activities 4aPROMIS Companionship 4aPROMIS Emotional Support 4aPROMIS Instrumental Support 4aPROMIS Informational Support 4aPROMIS Social Isolation 4aDiscrete Community ParticipationKnowledge QuestionnairePerceived Devaluation Discrimination (Adapted)Online Community ParticipationOccupational Participation Sort<br>
description: Participants were identified and recruited through providers who serve individuals with Autism Spectrum Disorder through Penn State Health. This includes providers at the Penn State Hershey, Medical Group – Psychiatry clinic who are familiar with the PARSEC program, as well as providers at other clinics who treat individuals with ASD. Providers outside of Psychiatry will be sent the IRB-approved PARSEC flyer to inform them of this program. They will be asked to distribute the flyers to their patients who fit the age and geographic criteria, and have an ASD diagnosis. TriNetX was used to request patient level data of those who meet age and diagnosis inclusion criteria. Identified patients will be sent information about the research study using approved recruitment materials. Community providers and networks were also utilized to recruit including local support groups, advocates, and online autism networks.
description: Between the ages of 18- and 40-years-old at the time of consent. Must have graduated from high school at the time of consent. A primary diagnosis of Autism Spectrum Disorder, as indicated by the SRS – 2 (Constantino & Gruber, 2012) or Autism Quotient (AQ; Baron-Cohen, Wheelwright, Skinner, Martin, & Clubley, 2001). English as a primary language spoken. Ability to self-report (i.e., understand and answer assessment questions written at a third grade comprehension level; self-report questions to be asked by study coordinator). Young adult with ASD must have a natural support (e.g., caregiver, partner, close friend) who is able to engage in the protocol as a member of the Family Support Team for the duration of the project. Must be living in either a non-urban municipality defined as a municipality with a population less than 6,000 or a rural county in Pennsylvania as defined by the Center for Rural Pennsylvania. Participants must self-report that the young adult with ASD is at least possibly ready for behavior change to increase community participation (see protocol developed by Bernstein, Bernstein, & Levenson, 1997). Smallest Geographic Unit: Zip code/PA municipality
description: face-to-face interview; telephone interview; web-based survey;