PArticipation in Rural Settings to Engage in Communities (PARSEC)

Name	File Type	Size	Last Modified
AdaptedURICANaturalSupport.pdf	application/pdf	38.8 KB	12/26/2022 09:16:AM
AdaptedURICAYoungAdult.pdf	application/pdf	38.6 KB	12/26/2022 08:54:AM
AdultAutismSpectrumQuotientAQ.pdf	application/pdf	47.1 KB	12/26/2022 08:54:AM
AttitudeNaturalSupport.pdf	application/pdf	35.9 KB	12/26/2022 08:53:AM
AttitudeYoungAdult.pdf	application/pdf	35.8 KB	12/26/2022 08:59:AM
BaselineCOVID19SurveyNaturalSuport.pdf	application/pdf	39 KB	12/26/2022 08:58:AM
BaselineCOVID19SurveyYoungAdul.pdf	application/pdf	38.7 KB	12/26/2022 08:54:AM
ClosureSurveyNaturalSupport.pdf	application/pdf	44.4 KB	12/26/2022 08:53:AM
ClosureSurveyYoungAdult.pdf	application/pdf	44.4 KB	12/26/2022 08:59:AM
DemographicsFormNaturalSupport.pdf	application/pdf	50.1 KB	12/26/2022 08:58:AM

Project Citation:

Pearl, Amanda M. PArticipation in Rural Settings to Engage in Communities (PARSEC). Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2022-12-26. https://doi.org/10.3886/E183381V2

Project Description

Summary: 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.

Funding Sources: United States Department of Health and Human Services. Administration for Community Living. National Institute on Disability, Independent Living, and Rehabilitation Research (90IFRE0018)

Scope of Project

Geographic Coverage: Pennsylvania

Time Period(s): 9/2018 – 3/2022

Collection Date(s): 10/2019 – 3/2022

Universe: 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).

Data Type(s): clinical data; observational data; survey data

Methodology

Response Rate: 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).

Sampling: 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.

Data Source: Not applicable

Collection Mode(s): face-to-face interview; telephone interview; web-based survey

Scales:

Demographics form (i.e., age, race/ethnicity, gender)
Social Responsiveness Scale, Second Edition (SRS – 2, other report version)
Motivation for behavior change questionnaire
Attitude Questionnaire
Attendance (i.e., number of intervention weeks completed)
Closure survey
University 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 4a
PROMIS Fatigue 4a
PROMIS Sleep Disturbance 4a
PROMIS Sleep Related Impairment 4a
PROMIS General Self-Efficacy 4a
PROMIS Satisfaction with Participation in Discrete Social Activities 7a
PROMIS Satisfaction with Social Roles and Activities 4a
PROMIS Companionship 4a
PROMIS Emotional Support 4a
PROMIS Instrumental Support 4a
PROMIS Informational Support 4a
PROMIS Social Isolation 4a
Discrete Community Participation
Knowledge Questionnaire
Perceived Devaluation Discrimination (Adapted)
Online Community Participation
Occupational Participation Sort

Weights: Not applicable

Unit(s) of Observation: Individuals

Geographic Unit: Zip code/PA municipality

Related Publications

Download this project

Published Versions

V2 [2022-12-26]

Export Metadata

Dublin Core

DDI 2.5

Report a Problem

Found a serious problem with the data, such as disclosure risk or copyrighted content? Let us know.

This material is distributed exactly as it arrived from the data depositor. ICPSR has not checked or processed this material. Users should consult the investigator(s) if further information is desired.