Family Adaptations to COVID - 19

  • End date
    Dec 31, 2021
Updated on 9 February 2021


Family Adaptations to COVID - 19: The Purdue University Neurodevelopmental Family Lab is recruiting Black parents and caregivers of children with Rett syndrome under the age of 12 are invited to participate in a study of how families cope with stress caused by the COVID-19 pandemic (IRB-2020-517 - "Family Adaptation to COVID-19"). Participation lasts 7 weeks and includes (1) completing web- and smartphone-based surveys and (2) sharing videos of you spending time with your child. To be eligible, families must live in the United States, live at least part-time with their child, speak primarily English at home, and must be willing and able to download a free smartphone app to complete surveys. Families are compensated up to $120 in Amazon gift cards over the course of the study. To learn more, please contact Taylor at the Neurodevelopmental Family Lab at and mention COVID-19 in your email. 


Participants. We will also recruit families from diverse racial/ethnic backgrounds (25 Black/African American families with special needs) to participate. 
Enrollment. Caregivers will e-mail the research coordinator to enroll. Screening will occur via e-mail. Inclusion criteria are (1) caregiver of child < 12 years of age with special needs, (2) access to iOS/Android phone with wifi or data connection, (3) reside in continental US, (4) primary language spoken at home is English, and (5) caregiver identifies as Black. 
Remuneration. Families will receive Amazon gift cards for participation. Families will receive $10 for completing the initial enrollment study and an additional incentive for each week of brief phone survey participation, with increasing amounts for longer term participation. The brief phone surveys will occur biweekly for 7 weeks at rates of $20 (Week 1; $10 additional for Phase I survey), $25 (Week 3), $30 (Week 5), $35 (Week 7). Thus, families participating can receive up to $120 total in gift cards. 
Data Storage. All consent and initial survey procedures will be conducted on Qualtrics. Data will be labeled with a study-specific numeric ID. Identifiable metadata (name, address, email address, DOB) will be collected during the pre-screen (not Qualtrics) and will be stored in Ripple, a HIPPA-compliant participant management database. The brief phone survey protocol, including video capture, will be administered using ExpiWell software. All participant data will be stored in Box, with identifiable data in a HIPAA-compliant folder.
Approach: This study will occur in three phases: initial enrollment survey, ecological momentary assessment study, and video diary uploads.
Measures. Measures for the study are attached to this IRB and will include:
(1) Initial COVID-19 Caregiver Survey (Phase I). Questions will address how caregivers are coping with the changes brought on by COVID-19. We will assess basic demographic information, such as family make-up (how many kids with and without disabilities, types of disabilities, age of children, number of adults in the home, location, etc.); specific questions about their experiences with the COVID-19 (whether and for how long they have been isolating, whether their children are receiving virtual schooling and/or services and therapies, if they or anyone they know have experienced any symptoms or been tested for COVID-19, etc.); and the extent to which they are receiving support from individuals in their lives. We will also integrate a best/worst scaling survey to assess the most stressful aspects of the pandemic for them. The survey will take no more than 45 minutes to complete.
(2) Ecological Momentary Assessment Protocol (Phase II, brief phone surveys). This protocol will be administered biweekly, starting Week 1 (e.g. Weeks 1, 3, 5, 7). Families will be administered a semi-brief (<15 minutes) weekly survey 1/week, as well as a series of very brief (<5 minute) Daily EMA surveys 4x/day for 7 days. Brief phone surveys will be collected via ExpiWell, an app developed by Dr. Louis Tay. Families download Expiwell to their personal smartphones, and all data are maintained centrally by our lab group. Assessments will be randomly sampled between 7-10AM, 11-2PM, 2-5PM, and 6-9PM. Adjustments will be made based on participant schedules, if needed, and anchored to local time.
(2a) Weekly Survey. The weekly survey will provide updated information about family and individual functioning, including evolving experiences related to COVID-19. Items will include a subset of the Phase I survey (10 or fewer items related to COVID-19 exposure, changes to employment status and caregiving) as well as validated measures of depression, anxiety and stress (Depression, Anxiety, and Stress Scale; 21 items), parenting competency (Parenting Sense of Competency Scale; 17 items), and social support (Duke Social Support and Stress Scale; 24 items). It will also provide information related to racial stressors and inequalities (10 or fewer items related to barriers, protests, and healthcare access).
(2b) Brief Phone Surveys. These surveys will be deployed 4x/day for 7 days and include items related to sleep, alcohol use, nutrition, daily activities, stress, coping strategies, exercise, caregiving responsibility, child problem behaviors, and COVID-19-related stressors. Items were selected from previously published studies and adapted to the current study. The EMA study was designed in consultation with Dr. Sean Lane (Co-PI), an expert in brief assessment, and with Dr. Elizabeth Richards (Co-PI), an expert in public health. Each survey will include less than 25 multiple-choice questions to minimize burden.
(3) Video Diaries (Phase III). Families will also be asked to upload three videos per week using a secure, personalized Box link (HIPAA-compliant) or via TORSH (FERPA-compliant). If families cannot upload using TORSH or Box, they are given the option to share videos using an encrypted flash drive that we will ship to them. Shipping fees will be covered by the lab. Video tasks will include playing with their child (10 minutes), eating a meal as a family (5 minutes), and reading with their child (5 minutes). Families will be provided instructions the morning of their upload and asked to send the video the same day. 
Family Resources. Across phases, families may request additional support resources by contacting our lab directly. 

Condition Rett Syndrome
Clinical Study IdentifierTX258289
Last Modified on9 February 2021


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