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Table 1 CRISIS AFAR Parent Baseline Survey v0.5.1 (3–21 years): Domains and Items

From: CRISIS AFAR: an international collaborative study of the impact of the COVID-19 pandemic on mental health and service access in youth with autism and neurodevelopmental conditions

 

Shared with CRISIS

AFAR-specific

Domain

Background

Coronavirus/COVID-19 Health/Exposure Status

Life Changesd

COVID-19 Worriesd

Behavior/

Mediad

Adaptive Living Skillsc,d

RRBc,d

Co-Occurring Problem Behaviorb,c,d

Servicesc

Item Descriptions

Age, sex at birth, gender

Any family impact

Food insecuritya

Worried self, other

Bed time weekdays, weekends

Entertains self

Repetitive motor mannerisms

Hyperactivity, difficulty staying on task

School

Ancestry

Family member COVID-19 diagnosed

Financial difficulty

Physical worries

Falling and staying asleepc

Structures time

Sensory seeking

Getting angry/

losing temper

Outside school

Health insurance, government assistance

Last 2-week exposure, symptom count

Housing instability concern

Reading and talkinga

Hours of sleep weekdays, weekends

Self-care

Rituals or routines

Verbal aggression

 

Urbanicity, household

School closed, job loss

Positive changes

Mental worries

Exercisea, time outdoors

Mealtime Independence

Insist others maintain routines

Physical aggression

 

Essential workers

 

Time outside home

 

TV and media, video games

 

Highly restricted/

strong interest

Deliberately injuring self

 

Child’s physical health, neuropsychiatric diagnosesa

 

Difficulty distancing

 

Social mediab,c

 

Adjustment to changes

Disobedient/

arguing

 

Current grade, level/employment,a

 

Event cancellation stressa

 

Tech to engage with familyb,c

  

Crying easily

 

Educational settingc

 

Stay-at-home stress

 

Tech to engage with peersb,c

  

Worry social situations

 

Respondent relation to child, age, and educationa

 

Hopefully enda

    

Worry separation from caregiver

 

Other caregiver’s educationa

      

Fearful

 

# of items

20

6

7

5

13

4

6

11

7

Time targeted

At time of completion

Last 2 Weeks

Three months prior to pandemic and last 2 weeks

Pre-pandemic and current

  1. CRISIS AFAR retained CRISIS key content and structure (e.g., last 2 weeks for COVID-19 Impact, COVID-19 Worries and Life Changes domains, the 3 months prior to the pandemic start in the respondent’s geographical area and last 2 weeks for the other Likert-scale items).a: Item slightly reworded; b: Item not asked for children younger than 5 years; c: Domain/item added in CRISIS AFAR. See Main Text and Additional File 1: Methods for more details on the adaptation process, as well as Additional File 1: Methods and Tables S5-S6 for the AFAR factor structure; d: Likert-scale items. See http://www.crisissurvey.org/crisis-afar/ for complete survey