DOI: 10.3886/e211543v1-159942
title: Evaluation of an online mindfulness training for adolescents with 22q11.2 Deletion Syndrome

description: The goal of this study was to evaluate the effectiveness of
the Aware Program, an online mindfulness education program, with adolescents
(aged 12-19 years) with 22q11.2 Deletion Syndrome and one of their parents. The
study was conducted online with participants from across the United States from
December 2023 to July 2024. Adolescent and parent participants completed online
pre- and post-test questionnaires (approximately 4-5 weeks apart) about
adolescents' coping with stress, anxiety, emotion regulation, executive
functioning, and global health. Participants also completed some basic
demographic questions (e.g., gender, race, ethnicity).

<br>
description: N/A<br>
description: Response Rates: For
this study, 90 parent-adolescent pairs consented to participate and met the
study's eligibility requirements. Of these 90 pairs, 55 pairs were randomized
to intervention (N = 27 pairs) or to wait-list control (N = 28 pairs). 35 pairs
(from the original 90 pairs) were excluded for various reasons (e.g., they were located outside of the United States; contact information was not verified). At the pre-test timepoint, 25 pairs in the intervention group completed the pre-test
questionnaire (1 pair did not complete the pre-test and one pair withdrew from
the study) and 27 pairs in the wait-list control group completed the pre-test
questionnaire (1 pair did not complete the pre-test). At the post-test timepoint, 21 pairs in the intervention group completed the post-test questionnaire (4 pairs did not complete
the post-test) and 27 pairs in the wait-list control group completed the
post-test questionnaire. <br>
description: Presence of Common Scales: Adolescent self-report outcome measures include:

 

· 
<b><br></b><b>Background information.</b> Adolescents will be asked to provide some basic demographic information
(e.g., age, gender, race, ethnicity). 

· <br><b>Self-Report Coping Measure</b> (SRCM;
Causey & Dubow, 1992) assesses
coping in response to stressors across five coping domains (e.g., Seeking
Social Support, Problem Solving, Distancing, Externalizing, and Internalizing).
Adolescents will respond to 34 items on a 5-point Likert scale (1 = Never to 5
= Always) to indicate how often they use a given coping strategy (e.g., “Try
to think of different ways to solve it)
when facing stress. Additionally, 3 items related to mindfulness skills (e.g.,
“Stop and notice how I am feeling”) will be included as a mindfulness subscale in this measure. 

· 
<b><br></b><b>Emotion Regulation Questionnaire</b> (ERQ;
Gross & John, 2003) assesses
differences in the use of two emotion regulation strategies: Cognitive
Reappraisal and Suppression. Adolescents will respond to 10 items (e.g., “I
keep my emotions to myself”) using a
7-point Likert rating scale (1 = Strongly disagree to 7 = Strongly agree). 

· <b>Emotional</b><b> Self-Efficacy Scale for Youth</b>
(Youth-ESES; Qualter et al., 2015) assesses youth’s beliefs about their ability
to understand and manage emotions in themselves and others. Adolescents will
rate their confidence in each of the 27 items (e.g., “I can tell when my
feelings change”) using a 5-point Likert Scale (1 = Not at all confident to 5 =
Very confident). The measure has four factors: Using and managing your own
emotions; Identifying and understanding your own emotions; Dealing with
emotions in others; Perceiving emotion through facial expressions and body
language. 

· <b>Generalized Anxiety Disorder (GAD-7;
Spitzer, Kroenke, Williams, & Lowe, 2006) </b>assesses
general anxiety in youth. Adolescents will respond to 7 items (e.g., “Over the
last two weeks, how often have you been bothered by the following problems…
feeling nervous, anxious, or on edge,”) using a 4-point Likert scale (0 = Not
at all, 1 = Several days, 2 = More than half the days, 3 = Nearly every day). 

· 
<b><br></b><b>Social Anxiety Scale for Adolescents
(SAS-A; La Greca & Lopez, 1998) </b>assesses social anxiety in
youth. Adolescents will respond to 18 items (e.g., It’s hard for me to ask
others to do things with me) using a 5-point Likert scale (1 = Not at all, 5 = All
the time). The measure has three factors: Fear of Negative Evaluation, Social
Avoidance and Distress-New; Social Avoidance and Distress – General. 

· 
<b><br></b><b>PROMIS
Pediatric Global Health Measure (PGH-7; Forrest, Bevans, Pratiwadi, Moon,
Teneralli, Minton, & Tucker, 2014)</b>
assesses overall health and wellbeing across 7 items. Adolescents will respond
to 4 items (e.g., In general, would you say your quality of life is…) using a
5-point Likert scale (5 = Excellent, 1 = Poor); 1 item (e.g., How often do you
feel really sad) using a 5-point Likert scale (5 = Never; 1 = Always); and 2
items (e.g., How often do you have fun with friends?) using a 5-point Likert
scale (5 = Always; 1 = Never). Parent report outcome measures include: 

 

· <br><b>Background information.</b> Parents will be asked to provide some basic demographic information
(e.g., age, gender, race, ethnicity). 

· 
<b><br></b><b>The Emotion Regulation Checklist </b>(Shields
& Cicchetti, 1997) assesses
parent reports of their adolescents’ emotion regulatory abilities. Parents will
respond to 24 items (e.g., “Responds positively to neutral or friendly
overtures by peers) on a 4-point Likert scale (1 = Never; 4 = Always). There
are two subscales: Emotion Regulation (e.g., appropriate displays of emotion,
awareness of emotions) and Negativity (e.g., lack of flexibility and regulation
of emotion). 

· <br><b>Childhood Executive Functioning
Inventory </b>(Thorell & Nyberg, 2008)<b> </b>assesses parent ratings of their
adolescents’ executive functioning. Parents will respond to 24 items (e.g.,
“Has difficulty thinking ahead or learning from experience.”) using a 5-item
Likert scale (1 = Definitely not true; 5 = Definitely true). There are four
subscales: Working Memory, Planning, Inhibition, and Regulation. 

· 
<b><br></b><b>Spence Children’s Anxiety Scale: Parent Report, Brief
Version (SCAS-P-8; Reardon, Spence,
Hesse, Shakir, & Creswell, 2018) </b>assesses
parent report of their adolescents’ anxiety. Parents will respond to 8 items
(e.g., “My child worries about things.”) using a 4-point Likert scale (1=Never,
4 = Always). 

· <br><b>The PROMIS
Pediatric Global Health Measure (PGH-7 Parent Proxy Report; Forrest et al.,
2014) </b>assesses parent reports of their
adolescents’ overall health and wellbeing across 7 items.<b> </b>Parents will
respond to 4 items (e.g., In general, would you say your child’s quality of
life is…) using a 5-point Likert scale (5 = Excellent, 1 = Poor); 1 item (e.g.,
How often does your child feel really sad) using a 5-point Likert scale (5 =
Never; 1 = Always); and 2 items (e.g., How often does your child have fun with
friends?) using a 5-point Likert scale (5 = Always; 1 = Never).
description: Parent-adolescents pairs were recruited from across the United States. <br>
description: Adolescents
with 22q11.2 Deletion Syndrome (22q11DS) and one of their parents<br>. Smallest Geographic Unit: Participants were recruited from across the United States.
description: web-based survey; A codebook is attached that provides more information on the variables included in the dataset that were collected via online questionnaires at pre-test and immediate post-test timepoints with parent and adolescent participants.<br>