DOI: 10.3886/e240520
title: Enhancing Community Participation Outcomes among Young Adults with Serious Mental Illnesses through Peer-Delivered Decision Support

description: This project contains data from the second of two sequential studies focused on supporting community participation among young adults with serious mental illnesses by addressing their decision-making needs. Data from Study 1, which was a qualitative investigation exploring how young adults make decisions related to community participation, have already been submitted to ICPSR (Enhancing Community Participation Outcomes among Young Adults with Serious Mental Illnesses through Peer-Delivered Decision Support - Community Participation Decision Making)<br><br>The data submitted here are from Study 2, which involves piloting an adapted decision-making intervention based on findings from Study 1. <br><br>Specifically, the current study examines whether a peer-delivered decision support intervention can be implemented in a community-based clinical setting and whether it shows promise for improving decision-making and community participation among young adults with serious mental illness (SMI). Peer Decision Coaching is a primarily one-to-one, manualized intervention with three phases - relationship building, decision support, and follow-up - guided by the Peer Decision Coaching Manual and an accompanying participant workbook. The intervention begins with 1–2 sessions focused on building trust and establishing how the peer decision coach and participant will work together. The decision support phase (2–12 sessions) helps participants identify a decision they need to make, clarify their decision-making needs, receive tailored support, and develop an action plan to implement their decision. In the follow-up phase (1–2 sessions), they review progress, determine whether additional support is needed, and reflect on what they learned. Each meeting follows a consistent structure (check-in, agenda setting, review, decision coaching activities, and action planning). Participants may also join optional monthly group check-ins via videoconference, where they share community participation activities, discuss related decisions, and support one another in problem-solving barriers to engagement.<br><br>Using a RE-AIM framework, the research focuses on reach, effectiveness, and acceptability. Reach is evaluated by assessing the ability to recruit and retain a sufficiently large and demographically representative sample, guided by CONSORT tracking and detailed baseline demographic data. Acceptability is assessed by examining how well participants receive and engage with the intervention. Data were collected at two time points, with 16 participants completing baseline assessments and 13 participants completing post-intervention assessments (approximately 3 months post-baseline).<br><br>Effectiveness is evaluated through a combination of quantitative and qualitative measures collected at baseline and post-intervention. Primary outcomes include decision-making quality, self-efficacy, behaviors, and satisfaction, as well as real-world implementation of decisions through community participation. The study also assesses potential mechanisms of action, including hope, empowerment, self-determination, service use, and tolerance of uncertainty. In addition, semi-structured qualitative interviews provide participant perspectives on how the intervention influenced their decision-making and participation, allowing the study to capture both measurable outcomes and lived experiences.<br><br>In addition, individual qualitative interviews were conducted with participants of the pilot study to understand: (1) specific supports they experienced during the intervention, (2) the perceived impact of these supports on decision-making and community participation outcomes, and (3) the perceived strengths and weaknesses of the intervention. These interviews were administered at the post-intervention time point. <br><br>Individual qualitative interviews were also conducted with the peer decision coach and their direct supervisor to understand facilitators and barriers to implementation of the intervention, as part of a process evaluation. These interviews were conducted after implementation of the intervention concluded. The survey was designed to assess how likely peer specialists are to use Peer Decision Coaching in their work. <br><br>The files with quantitative data, qualitative interviews with study participants, and peer decision coach interviews are included in this submission, along with survey instruments and code books where necessary.<br><br>
description: N/A
description: Response Rates: N/A
description: Presence of Common Scales: <b>Service Use and Resources Form - Monthly (SURF-M)</b>

The SURF-M (e.g., Thomas et al., 2021; Rosenheck et al.,
2003) is a clinician-administered interview that provides a comprehensive
picture of an individual’s recent mental health service utilization. It
captures detailed information about where a person is living, their use of
inpatient and outpatient psychiatric or substance use services, and their
engagement with other supports such as case management and peer services. The
measure also documents current psychiatric medications, and the extent of
general medical service use. In addition, it asks about work, school, volunteer
activity, and functional health limitations over the past 30 days. <br>

<b><br>Temple University Community Participation (TUCP) Measures</b>

For a list of 27 different activities, The Temple University
Community Participation (TUCP) measure asks individuals to indicate how many
days in the past 30 they participated in the activity, whether this activity is
important, and whether they feel like they do this activity enough, not enough
or more than enough. The scale has good reliability and validity (Salzer et
al., 2014; Salzer et al., 2015; Burns-Lynch et al., 2016). Several measures
were created from the TUCP data:

<b>TUCP – Amount of Participation</b>

The TUCP asks about the amount of community participation
over the past 30 days across 27 domains of everyday life. These domains span
social, recreational, civic, and economic activities, such as going to
restaurants, attending religious services, volunteering, or visiting friends
and family. Sample items include: “In the past 30 days, how many days did
you go to a restaurant or coffee shop?” and “How many days did you visit
friends or family in their homes?” The total score is the sum of days
across all activity types (range 0–810). Higher scores indicate greater amount
of participation. 

<b>TUCP – Importance of Participation</b>

The TUCP also assesses the number of activity domains
individuals consider important in their lives, reflecting the value placed on
community involvement across multiple areas. It provides insight into personal
meaning and goal orientation, separating desired engagement from actual
behavior. Respondents indicate whether each of the 27 TUCP activity types
(e.g., volunteering, attending classes, exercising, socializing) is personally
important. Sample items include “Is going to a park or recreation center important
to you?” and “Is volunteering important to you?” The total score is
the sum of activities marked “important” (range 0–27). Higher scores reflect a
greater number of valued participation areas. This dimension enhances the
TUCP’s conceptual strength by distinguishing between frequency and personal
salience of activities. 

<b>TUCP – Sufficiency of Participation</b>

The TUCP also measures sufficiency of participation - whether
individuals feel they participate as much as they would like in valued
activities. This construct captures alignment between desired and actual
community engagement, providing a self-appraisal of fulfillment. The score is
calculated as the percentage of activities deemed “important” for which the
respondent reports “doing enough” (range 0–100). Higher percentages indicate
greater perceived adequacy and satisfaction with participation. 

<b>TUCP – Breadth Ratio of Participation</b>

The TUCP Breadth Ratio assesses the diversity of community
participation by examining the number of important activity types engaged in at
least once over the past 30 days. While the “amount” score reflects frequency,
the “breadth” score highlights scope and variability, distinguishing between
narrow and wide engagement across life domains. For example, someone who
participates frequently in one or two areas (e.g., social visits and shopping)
would have a lower breadth ratio than someone who participates occasionally
across many areas. The measure is calculated as the number of important activities
performed at least once divided by the total number of important activities,
resulting in a score from 0 to 1. Higher scores indicate greater diversity and
inclusion across community settings. 

<b>TUCP – Coach Influence (Post-Intervention)</b>

This internally developed measure assesses the perceived
influence of a peer decision coach on a participant’s engagement across 27 TUCP
activity domains. It operationalizes the degree to which coaching contributes
to real-world participation decisions and goal implementation. Participants
respond to items such as “Did the decision you worked on with the peer
decision coach relate to going shopping?”. The total score is the total
number of activities on which decisions were related to areas worked on with the
peer decision coach during the intervention.

<b>TUCP – Targeted Sufficiency (Post-Intervention)</b>

“Targeted sufficiency” captures how effectively an
intervention helped participants achieve adequate participation in the
specific life areas they personally targeted for improvement. It reflects not
just whether participants increased activity overall, but whether they reached
a level of participation they felt was “enough” in those areas that
mattered most to them. In other words, it measures the alignment between
intervention goals and subjective adequacy of participation, serving as an
indicator of goal attainment and meaningful recovery progress. This internally
developed measure assesses the percentage of participation areas targeted
during the intervention that were done post-intervention. <br><b><br>Basic Psychological Need Satisfaction (BPNS)</b>

The Basic Psychological Need Satisfaction scale (Deci &
Ryan, 2000) measures fulfillment of three fundamental psychological needs-autonomy,
competence, and relatedness-as outlined in Self-Determination Theory (SDT).
These constructs represent essential conditions for motivation, well-being, and
psychological growth. Sample items include “I feel free to decide for myself
how to live my life” (autonomy), “I feel capable at what I do”
(competence), and “I feel close and connected with other people”
(relatedness). Scores are typically calculated as the average of all items or subscale-specific
averages, with higher scores reflecting greater satisfaction with basic needs.
The BPNS has demonstrated robust psychometric properties across cultural
contexts, with α coefficients generally exceeding .80 and a stable three-factor
structure. <br>

<b><br>Empowerment Scale</b>

The Empowerment Scale (Rogers et al., 1997) assesses
psychological empowerment among individuals with mental health conditions,
capturing personal control, self-efficacy, and community activism. It is
grounded in consumer/survivor conceptualizations of recovery and
self-determination. Sample items include “I see myself as a capable person”
and “People working together can have an effect on their community.”
Scores are calculated as the average of all items, with higher scores
reflecting greater empowerment. The scale has sound psychometric properties and
has been widely used in evaluations of peer-support and recovery programs,
providing a key indicator of personal and collective agency.<b></b>

<br><b><br>Hope Herth Index (HHI)</b>

The Herth Hope Index (HHI) (Herth, 1992) is a valid and
reliable 12-item measure designed to assess generalized hope, conceptualized as
a multidimensional, dynamic life force characterized by a confident yet
realistic expectation of achieving meaningful goals. The HHI was developed as a
brief, psychometrically robust alternative to the longer Herth Hope Scale and
is widely used in health psychology, mental health, gerontology, and chronic
illness research. Items are rated on a four-point Likert scale (1 = strongly
disagree to 4 = strongly agree), and sample items include: “I have a
positive outlook toward life,” “I can see possibilities in the midst of
difficulties,” and “I feel scared about my future” (reverse-scored).
The total score is the sum of all items, with higher scores indicating greater
levels of dispositional hope. Three subscales were also created by averaging
the constituent items. These included the Inner Sense of Temporality and
Future, Inner Positive Readiness and Expectancy, and Interconnectedness with
Self and Others. <br>

<b><br>Intolerance of Uncertainty Scale (IUS)</b>

The Intolerance of Uncertainty Scale (IUS; Buhr & Dugas,
2002) measures the tendency to react negatively to uncertain situations. It
includes cognitive, emotional, and behavioral aspects of uncertainty
intolerance. Sample items include “Uncertainty makes life intolerable”
and “I can’t stand being taken by surprise.” Scores are averaged, with
higher scores reflecting greater intolerance. The measure has strong internal
consistency, good test–retest reliability over a five-week period, and
convergent and divergent validity when assessed with symptom measures of worry,
depression, and anxiety.

<br><b><br>Intentional Peer Support (IPS)</b>

The Intentional Peer Support scale (Penney, Ostrow &
Burke-Miller, 2021) assesses relational qualities central to peer-delivered
services, including mutuality, safety, shared power, and growth. Rooted in the
IPS model developed by Shery Mead, it conceptualizes peer support as a
transformative rather than prescriptive process. Example items include “I
felt safe working through disagreements with the decision coach” and “Conversations
with the decision coach left me feeling hopeful.” Scores are averaged, with
higher values indicating stronger peer-support quality. Although quantitative
psychometric evidence is emerging, qualitative and pilot evaluations suggest
strong face and construct validity. The IPS framework has been widely
implemented in peer-run mental health services and is recognized
internationally as a recovery-oriented standard.

<br><b><br>Satisfaction With Decision Support (SDS,
Post-Intervention)</b>

This measure captures participants’ satisfaction with the
information, guidance, and support they received during the decision-making
process. It assesses perceived adequacy of information, alignment with values,
and overall confidence in the decision. Example items include “I am
satisfied with the amount of information provided to me” and “The
decision I made was the best possible one for me personally.” Scores on
each item range from 1=strongly disagree to 5=strongly agree. The item scores are
summed, with higher scores indicating greater satisfaction with
decision-support services; scores of 24 or higher are generally considered to
represent high satisfaction (Hitz et al,. 2013). <br>

<b><br>Decision Self-Efficacy Scale (DSE)</b>

The Decision Self-Efficacy Scale (O’Connor, 1995; O’Connor,
2002) evaluates confidence in one’s ability to engage in informed and
value-consistent decision-making. It captures perceived competence in gathering
information, clarifying values, and expressing preferences. Example items
include “I feel confident that I can ask questions without feeling dumb”
and “I feel confident I can figure out the choice that suits me best.”
Scores are averaged across items, with higher scores reflecting greater decisional
self-efficacy. <br>

<b><br>Decisional Conflict Scale (DCS)</b>

The Decisional Conflict Scale (Metz et al., 2018; O’Connor,
1995; Dolan, 2013) measures personal uncertainty when making important health
or life decisions. The version in the current study has nine items, with sample
items like “I know the benefits of each option” and “I am clear about
which risks matter most to me.” Scores are averaged, with higher scores
reflecting greater decisional conflict. <br>

<b><br>Decision-Making Behaviors (DMB)</b>

This scale, also developed by O’Connor et al. (2003)
assesses the use of effective decision-making strategies, such as identifying
pros and cons, clarifying personal values, and gathering information. Sample
items include “I got information on options, pros, and cons” and “I
considered how important each of the pros and cons were.” Scores are
averaged, with higher values indicating greater use of adaptive decision
behaviors. Derived from the Ottawa Framework of Decision Support, this measure
captures skill development and self-regulation in the decision process.<br>
description: Convenience Sampling
description: Young adults with serious mental illnesses. Smallest Geographic Unit: N/A
description: computer-assisted self interview (CASI); computer-assisted telephone interview (CATI); other; Data were collected from participants of the pilot study via research assistant-administered interviews conducted via videoconference. Data were collected from peer specialists regarding potential adoption of Peer Decision Coaching via a self-administered survey facilitated via RedCAP.