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Increasing Community Engagement Skills Used by Adults With Schizophrenia Participating in A Psychosocial Intervention.
Increasing Community Engagement Skills Used by Adults With Schizophrenia Participating in A Psychosocial Intervention.
Objective: We present findings from a qualitative study aimed at understanding the experiences of Veterans
with schizophrenia and negative symptoms who participated in trial of an intervention to increase social and
community participation called Engaging in Community Roles and Experiences (EnCoRE). Our goal was to
understand what participants (N = 36) perceived they learned in EnCoRE, how participants used what they
learned in their daily lives, and if and how participants built on these experiences in ways that might lead to
sustained change. Method: Our analysis approach was inductive (bottom up), drawing on interpretive
phenomenological analysis (IPA; Conroy, 2003), plus some top-down examination of the role of EnCoRE
elements in participants’ accounts. Results: We identified three themes: (a) Learning skills led to increased
comfort talking to people and planning activities; (b) Increased comfort led to increased confidence to try
new things; and (c) The group atmosphere offered support and accountability that helped participants
practice and refine new skills. Conclusions and Implications for Practice: The process of learning skills,
planning to use them, implementing them, and returning to the group for input helped many surmount
feelings of low interest and low motivation. Our findings support having proactive discussions with patients
about how building confidence can support improved social and community participation.
People living with schizophrenia often face challenges engaging long-term outcomes for individuals living with schizophrenia and
in social and community activities. A critical barrier is negative represent an unmet therapeutic need (Correll & Schooler, 2020;
symptoms that reflect diminished feelings and thoughts that support Galderisi et al., 2018; Okada et al., 2020; Patel et al., 2015). The
social interaction. Negative symptoms are associated with poor literature on psychosocial interventions for negative symptoms is
investigation, writing of original draft and writing of reviewing and editing and
Melanie E. Bennett https://orcid.org/0000-0001-8166-157X equal role data curation, formal analysis, project administration and supervision
Support for this research was provided by grant 5I01RX001293 from the and supporting role in Methodology. Lorrianne Kuykendall played supporting
Rehabilitation Research and Development Service of the U.S. Department of role in data curation, formal analysis, project administration and writing of
Veteran Affairs. This research is supported by the Department of Veterans reviewing and editing. Kirsten Harvey played supporting role in data curation,
Affairs. It is the result of work supported with resources and the use of formal analysis, project administration and writing of reviewing and editing.
facilities at the VA Capitol Health Care Network (VISN 5) MIRECC and the Alicia Lucksted played lead role in data curation, formal analysis and supervi-
University of Maryland School of Medicine Department of Psychiatry. This sion and equal role in project administration and supporting role in funding
article reflects the authors’ personal views and in no way represents the acquisition, writing of original draft and writing of reviewing and editing.
official view of the Department of Veterans Affairs of the U.S. Government. Correspondence concerning this article should be addressed to Melanie E.
The authors gratefully acknowledge the veterans who participated in this Bennett, Department of Psychiatry, University of Maryland School of
research. This study was part of a clinical trial registered as NCT02469389 at Medicine, 737 West Lombard Street, 5th Floor, Baltimore, MD 21201,
www.clinicaltrials.gov. The authors have no conflicts of interest to disclose. United States or VA Capital Healthcare Network Mental Illness Research,
Portions of these findings were presented in a symposium talk at the 2019 Education, and Clinical Center, Veterans Affairs Maryland Health Care
Schizophrenia International Research Society, Orlando, Florida, United States. System, 10 N. Greene Street, Baltimore, MD 21201, United States. Email:
Melanie E. Bennett played lead role in conceptualization, funding acquisition, mbennett@som.umaryland.edu
83
84 BENNETT, KUYKENDALL, HARVEY, AND LUCKSTED
largely quantitative and finds that skills-based approaches are stakeholder group is critical to decision-making regarding dissemi-
associated with modest reductions in negative symptoms and im- nation and implementation (Skivington et al., 2021).
provements in functioning (Elis et al., 2013; Turner et al., 2018).
However, participants experience study interventions firsthand, yet
researchers rarely ask about their experiences. People living with Method
schizophrenia report that, more than symptom reduction scores on Participants and Procedures of the Parent Trial
ratings scales of functioning, the outcomes that mean the most to
them are person-oriented indicators of recovery that support their The parent trial took place at three Veterans Affairs (VA) Medical
living rewarding and fulfilling lives (Thomas et al., 2018). Soundy Centers. Participants were recruited between 12/2015 and 7/2019.
et al. (2015) reviewed qualitative studies on recovery from patient, Inclusion criteria were: (a) Diagnostic and Statistical Manual of
family, and provider perspectives and found that relationships and Mental Disorder, fifth edition diagnosis of schizophrenia or schizoaf-
belonging facilitated recovery while social isolation and a lack of fective disorder determined by the Structured Clinical Interview for
independent community activity were barriers. To fully explore the DSM-5 (First et al., 2015); (b) Following recommendations that trial
impact of psychosocial interventions for negative symptoms, quali- participants experience clinically meaningful negative symptoms
tative methods allow for greater understanding what people learned, (Galderisi et al., 2021), participants met a minimum rating on the
how they did or did not apply what they learned in their daily lives, Clinical Assessment Interview for Negative Symptoms (Kring et al.,
and for gaining a contextualized look at an intervention’s impact. 2013) of a “moderately severe deficit” on one or more of any
We present qualitative findings collected as part of a randomized symptom domain within the affect-motivation factor (i.e., symptoms
controlled trial testing a multicomponent intervention that integrated of asociality, avolition, and anhedonia) or a minimum rating of a
skill-building with real-life application to improve social and com- “moderate deficit” on two or more affect-motivation symptom
munity participation in a sample of Veterans living with schizo- domain; (c) Age between 18 and 75 years; (d) Seen by a mental
phrenia and negative symptoms. The intervention, called Engaging health service provider consistently for 2 years (to demonstrate regular
in Community Roles and Experiences (EnCoRE), is a 12-week mental health care); (e) Competent to sign Informed Consent (deter-
program that includes motivational, behavioral, and cognitive strat- mined with standard questions). Exclusion criteria were: (a) Docu-
egies to help participants increase motivation, perform skillfully in mented history of serious neurological disorder; (b) Intellectual
social situations, reduce negative expectancies, and plan participa- disability (a total score <70 on the Wechsler Test of Adult Reading
tion in social and community activities. The conceptual framework Wechsler, 2001 or indicated by chart review); (c) Inability to complete
for EnCoRE connects a set of antecedents (behavioral skills deficits, the baseline assessment over two appointments; (d) Current problem
negative expectancies, deficits in anticipatory pleasure and intrinsic substance use [Michigan Alcoholism Screening Test, Selzer, 1971,
motivation), mediators (negative symptoms), and outcomes (social/ score ≥5; Drug Abuse Screening Test, Skinner, 1982, score ≥6].
community functioning; Horan et al., 2010; Kring & Caponigro, The parent trial randomized 105 participants to EnCoRE or a
2010; Leifker et al., 2009; Medalia & Brekke, 2010; Ventura et al., health and wellness psychoeducation control condition. Overall, 53
2009). After two individual meetings to identify activities with participants were randomized to EnCoRE; all were offered the
high personal relevance, participants attend group meetings which postintervention qualitative interview. In this analysis, data from
follow a standard format: (a) Review content and activity plans from the 36 participants who completed the qualitative interview are
the previous session; (b) Learn a new topic, skill, or strategy; included. Seventeen did not complete the interview: 13 were lost to
(c) Complete an activity to practice the new skill or strategy; and contact or refused to complete the post treatment assessment, and 4
(d) Plan a social or community participation assignment to imple- completed the post treatment assessment but were unable to com-
ment in between group meetings. The program begins with educa- plete the qualitative interview at that time.
tion about negative symptoms and the ways they can be barriers to Parent trial procedures, including for qualitative data collection,
social/community participation. At each meeting, participants set a were approved by the VA Central Institutional Review Board;
social/community participation goal and use a structured format parent trial informed consent included consent for audio-recording
for activity planning. Several meetings focus on social skills such the interviews. Interested individuals were scheduled to complete
as starting conversations and making plans. Participants learn to informed consent and screening measures to ensure eligibility. If
challenge negative expectations that activities will be unpleasant or eligible, they completed the baseline assessment, were randomized
that they will be unable to perform them well. The program includes to condition, and were asked to complete posttreatment and 3-month
frequent practice via role-playing during group meetings and im- follow-up assessments.
plementing activity plans between meetings. EnCoRE is delivered
in small groups by trained interventionists of varied professional
Qualitative Interview Procedures
backgrounds (e.g., psychology, counseling, social work, peer sup-
port) with experience in serious mental illness. At the posttreatment assessment, participants randomized to
Through qualitative interviews, our goal was to understand what EnCoRE were invited to complete the qualitative interview. If
participants perceived they learned in EnCoRE and how participants the participant agreed, an interviewer would arrive at the end of
used what they learned in their daily lives. We also wanted to know the quantitative assessment to conduct the hour-long interview.
if and how participants built on these experiences in ways that might Participants were paid to complete the posttreatment assessment;
lead to sustained change. Information from service users can they were not paid an additional sum to complete the interview.
supplement quantitative findings to yield an enriched understanding Interviews were conducted one-on-one in a private room by experi-
of whether an intervention is acceptable to the target group and enced qualitative interviewers which included authors MB, KP, LK,
whether users perceive it as beneficial. Input from this key and one additional staff member; all had doctoral or masters level
INCREASING COMMUNITY ENGAGEMENT IN SCHIZOPHRENIA 85
training in research methods and completed interview training participants’ accounts. Our focus on participants’ experiences and
conducted by author AL. All interviewers delivered both EnCoRE what they carried from these experiences into their personal lives drew
and the comparison intervention during the trial but did not do so on interpretive phenomenological analysis (IPA) (Dowling, 2007).
with any participant whom they interviewed. IPA rests on repeated and thorough familiarity with the data as in all
Most interviews (n = 33) took place in person; several (n = 3) qualitative analysis, with focus on not only detailed description of
were completed by telephone when a participant could not stay phenomena as interviewees describe them but also close attention to
after the quantitative assessment. Interviews were audio-recorded the meanings and subjectivity in their descriptions and to the inter-
and transcribed by a VA-approved transcription agency and stored viewers’ perceptive role (McGovern, 2017; Munhall, 2013).
behind the VA firewall. Overall, 35 interviews were audio-recorded. Research staff proofread transcripts against recordings to ensure
One interview was not recorded due to a recording error; the accuracy. We created brief summaries of the first 6 interviews to
interviewer took detailed notes for use in analysis. examine sufficiency of the interview guide, main points, surprising
The interview guide is provided in Table 1. The semistructured data, and questions. After review and discussion, the team con-
interview included open-ended, qualitative questions on participants’ cluded that the interview guide was working well and made only
general experiences with the program, which program components minor adjustments. Data analysis proceeded in three phases. In
they found the beneficial, and details about how components con- each phase, transcripts were coded by two independent study team
nected to starting new activities/relationships or reconnecting with members, followed by review by two other team members who
people in their lives. Next, they were asked what they liked best and integrated them into a final consensus coding, bringing any impor-
least about EnCoRE and their thoughts on the facilitator. The last tant inconsistencies to the full team for resolution.
section asked about practicalities (i.e., number and length of sessions;
accessibility). Participants were also asked what could make EnCoRE
better. Follow-up prompts were specified for when the interviewer Phase 1: Elements Identified as Helpful
wanted additional insight into a participant’s experience. Here, we Participants described elements of EnCoRE they found helpful and
focus on participants’ experience in EnCoRE and its application in why. Pairs of coders independently read transcripts, identified relevant
their lives; answers to the practical questions were summarized and passages, and excerpted them into a structured template. We created a
used internally to support future implementation. priori codes for each element in the curriculum: Information, Action
The 36 participants who completed the qualitative interview had Planning, Social Skills Training, Making Plans, Practice via Role-
a mean age of 55.81 years (SD = 8.95). Most (78%) were Black/ Playing, and Cognitive Restructuring. We added new codes for
African American (78%) and male (89%). All were diagnosed additional features participants identified as valuable: Encouragement,
with a schizophrenia spectrum disorder (33% schizophrenia, 67% Building Confidence, Group Atmosphere, Accountability, Facilitator
schizoaffective). Style, and Formalizing Skill Knowledge. Because we could not access
qualitative data analysis assistance software (due to software restric-
tions at our facility), we gathered all excerpts under each code into a
Data Analysis
separate document. The team reviewed each document part way
Our analysis approach was inductive (bottom up, Thomas, 2006), through the study and again when all data were available, to discuss
with some top-down examination of the role of EnCoRE elements in our interpretations of what interviewees said and meant about each
Table 1
Qualitative Interview Guide for Veteran Participant Interviews
element. After each review, one team member drafted an interpretive Phase 1 Results: Elements of EnCoRE
memo for that element which the rest of the team reviewed and Identified as Helpful
revised. We later combined several narrowly defined elements (e.g.,
“group accountability” was incorporated into “group atmosphere”) Three main themes emerged regarding helpful elements of
and created an interpretive memo about “EnCoRE as a whole” to EnCoRE: (a) Practicing skills helped participants use them in social
reflect participant comments regarding an important gestalt of the situations, (b) The group atmosphere offered support and account-
intervention separate from individual elements. ability that helped participants feel comfortable practicing new
Discussion of the nature and role of each EnCoRE element led us to skills, and (c) Feeling comfortable and skilled –that is, Themes 1
consider the relationships among them. This led us to develop several and 2 coexisting—helped give participants confidence to try new
higher order themes regarding the interplay of EnCoRE skills and activities. These themes are presented with quotes reflecting parti-
elements in participants’ experiences, which we first described within cipants’ voices and experiences. The themes presented are of equal
individual elements’ interpretive memos and then further developed importance in the data.
in their own memos. Our final results from Phase 1 (below) are
structured to foreground these multi-element themes because they
better captured participants’ accounts of EnCoRE’s impact than Theme 1: Practicing Skills and Strategies Helped
individual elements alone. Participants Feel More Comfortable Using
Them in Social Situations
Phase 2: Engagement Stories Participants reported that a main reason for not participating in
social/community activities was feeling unsure about constituent
Study team pairs independently re-read all transcripts and identified skills such as how to talk with people and make plans with them.
92 “engagement stories,” passages that described participation in They described four interrelated ways that EnCoRE helped them
social or community activities. After discussing them, we developed a gain skills and confidence to use them. First, learning to translate
set of codes for the type of participation reflected in each story: Initiate their goals/wishes into concrete plans, via creating what we called
a New Social Activity; Increase Engagement in an Existing Social an Action Plan which leads one through writing down an activity’s
Activity; Initiate a New Relationship; Increase Engagement in an steps and practical considerations in order, helped. Participants
Existing Relationship; Practical Life Maintenance; Reduce Interper- (Table 2, Rows 1–2) credited the process of “putting it down on
sonal Conflict; Positive Internal Change; and Other. We noted article” as helping them consider the steps involved, stay focused,
EnCoRE elements mentioned in each “story” as helpful. Research consider barriers, and identify solutions if things did not go
team members entered their coding of each story into a matrix, to according to plan. Participants noted that Action Planning was
which they could add short memos, for ease of later review. This flexible and could accommodate changes. This made them feel
process included regular team discussions and review of the matrix to comfortable as they tried new things. For example, Participant 389
resolve coding questions as they arose. Our multilayered discussions (male, age 53) said, I followed that [action plan] as best as I could.
yielded higher level theme development addressing the question And if I couldn’t, I would try and see if I could do it for the
“What do the change stories tell us about how or why EnCoRE following week.
helped participants engage in activities”; these themes were docu- Second, participants (Table 2, Rows 3–5) identified learning and
mented and refined over time in extensive memos. practicing conversation skills as especially helpful, because uncer-
tainty and worry about how to talk to people inhibited participation
in interactions and activities. They described how learning how to
Phase 3: Extended Use of Skills have a conversation helped them relax into and enjoy talking to
others and listening to what they had to say.
All transcripts were also coded to capture reports of using inter-
Third, interviewees (Table 2, Rows 6–7) said repeated practice of
vention skills to support continued participation in social or commu-
skills in a supportive context via role-playing led to improved
nity activities after the intervention had ended. This information was
learning, confidence, and comfort. Role playing provided a safe
categorized as follows: Repeated the Activity (e.g., Went out for
way to try out a skill, and, through feedback and repetition, improve
coffee with the same friend another time), Highly Similar Activity
it. This made application easier; participants (Table 2, Rows 8–9)
(e.g., Went out for coffee with a different friend), Different but
felt prepared to handle various possible responses, which allowed
Related Activity (e.g., Went out for a meal with a family member),
them to confidently approach a situation in real life.
Entirely Different Activity (e.g., Attended a sporting event with a
Fourth, many participants (Table 2, Rows 10–12) reported that,
family member), and Experience made Future Activities Easier (e.g.,
before EnCoRE, negative expectations would block their initiating an
Having gone out for coffee, I know I can do that again).
interaction, going to an event, or having a good time. Participants
described learning how to examine assumptions, assess them, and make
conscious decisions about how to think. This included participants
Results
learning not to assume that activities would go badly. For example,
Table 2 lists analysis phases, subthemes where applicable, and Participant 630 (male, age 54) said: I learned not to feel discouraged
example quotations. Each participant quote is identified by a random and not to jump to conclusions … cause I could be wrong.
number, gender, and age. In the text, we have indicated the quotation In sum, (a) learning skills for navigating social interactions,
in Table 2 that corresponds to each phase and theme identified in the combined with (b) the concrete and practical ways they are taught
results. and (c) the repeated practice to refine skill execution and build
INCREASING COMMUNITY ENGAGEMENT IN SCHIZOPHRENIA 87
Table 2
Phases and Subthemes With Example Quotations
Random
Row Quotation number Gender Age
Phase 1: Elements of EnCoRE identified as helpful; Theme 1: Practicing skills and strategies helped participants feel more comfortable using
them in social situations
1 “We did it right on the sheet and it’d say … what we wanted to do, when, where, what were some 298 Male 60
of the barriers and what would be solutions and who would you call if you needed some help.”
2 “We did an action plan and we learned how to assess our recreational activities and make plans … I 982 Female 63
went to movies, I went to the library, I read books. I went to church. That was a good thing for
me because [before] I wasn’t planning.”
3 “At one time I couldn’t start a conversation … And that’s been my problem, you know what I 630 Male 54
mean? But after she, they told me a few things and then a few things [we did] in the group, so I
could sit down and just relax myself and take my time … And say something.”
4 “Start and maintaining conversations … Because normally I’m not a talkative person. But being able 531 Male 37
to talk to somebody about sports or the weather is something I can do.”
5 “[ref: EnCoRE] showed me how to … talk to different people. It’s like you introduce yourself, tell 896 Male 46
them your topic in like a two-minute sentence, listen to their feedback, then repeat it and thank
them for whatever the conversation was.”
6 “The role-playing … was helpful because it was like a real-life situation … It was good practice … 601 Male 58
It helped you feel more confident dealing with different people and different situations.”
7 “It [ref: role-playing] was like, it gives you a chance to correct the mistakes that you made each time 214 Male 64
and make you aware of what you did wrong because not only the individual that was doing the
role play but … the other classmates were giving you their view point on the things that you did
and didn’t do.”
8 “I liked the role-playing, because, you know, I’m kind of a quiet person, and you know sometimes 351 Female 52
when people say things to me … I would just keep it inside and, you know, not say it until it gets
to the point where it boils over, and then I just blow up. Whereas … doing role-playing with us
… I could say what I want to say, but it doesn’t have to be in anger, doesn’t have to explode for
me … I can say it in a positive way where I won’t get that person upset or feel offended.”
9 “Well, she would put up on the board different things … about a situation. And then we’d role play 868 Male 60
that situation … sometimes she’d be real easy on us. Other times it would be real hard on us …
that taught me that, you know, not everybody’s gonna be agreeable with you.”
10 “I learned not to feel discouraged and not to jump to conclusions … cause I could be wrong.” 630 Male 54
11 “Now, sometimes your thoughts can be negative. And you have to do things to make them positive, 601 Male 8
so. And, from that point of view sometimes you have to think about things before you–you know
before you say it.”
12 “ … before, like, I was already making decisions before I even got into the place … I’m going to 896 Male 46
have a bad time so I come in there grumpy as heck and stay grumpy and it’s like–if I’m going to
be like that I shouldn’t have even went.”
Phase 1: Elements of EnCoRE Identified as Helpful; Theme 2: The group atmosphere offered a combination of support and accountability that helped
participants feel comfortable and motivated learning and practicing new skills
13 “Everybody in the room are Veterans, so we had that in common, so we could relate on a lot of 349 Male 49
things. Everybody had, one way or the other, had the same symptoms. We all suffer from the
same thing, so ya know, I look at it like … we all suffer from some sort of schizophrenia. If they
can open up and do this, maybe if I tried, then it’ll help me a little bit [too].”
14 “And then we had to do it by–we had to do it by–in a couple of days, so now we–now we gonna do 744 Male 69
it. We can’t come back to group and say we didn’t do nothing. So hopefully you did do
something.”
15 “And I think like if I missed the goal due to the negative symptoms, it was cool cause I could go to 784 Male 60
the group and say I didn’t do it this time, and then they said, ‘Okay, well try, you know, write it
again and try.’ So, that was the part that the group played in it.”
16 “M [ref: group facilitator] said that the group would kind of be like a kind of a nudge group to try 784 Male 60
and push us into our action plans. So, it did help.”
17 “And then we had to do it by–we had to do it by–in a couple of days, so now we–now we gonna do 374 Male 54
it. We can’t come back to group and say we didn’t do nothing. So hopefully you did do
something.”
18 “So, she gave some good information, and I mean she was an excellent teacher. I had no problem 351 Female 52
with her. You know, she’d listen, and I mean that’s all you can ask for is somebody to listen.”
19 “It was nice to know that she was a Veteran. You know, so I felt really comfortable around her … I 351 Female 52
liked her a lot, because you know I felt comfortable because when, you know, I found out she was
a Veteran. I was oh okay, you know.”
20 “[ref: Veteran facilitator] And she’s somebody, she’s just been around. You know, so you could see 630 Male 54
she was a Veteran … so she could relate on some of the experiences.”
(table continues)
88 BENNETT, KUYKENDALL, HARVEY, AND LUCKSTED
Table 2 (continued)
Random
Row Quotation number Gender Age
Phase 1: Elements of EnCoRE Identified as Helpful; Theme 3: Feeling more skilled and gaining confidence in using those skills led participants to
anticipate more success in social interactions and gave them the confidence to do things.
21 “So that [ref. action plan] helped me start going out a little bit because I wanted to complete my 833 Male 55
assignments really bad. I had to fight my way through some of it, you know, but, just with me
having the, thought that I gotta complete it so that was kinda like I guess you say I faced my fears
in a lot of situations.”
22 “I liked … how she taught us to act in different situations when we go out, how to talk, how to 333 Male 53
compromise, how to handle the situation … I was kind of procrastinating and lazy. That’s all I
had to do is get up off the couch and go, and just going there is not going to hurt me. Once I get
there, I feel okay.”
23 “Instead of being all bottled up and shut down and not speaking up for myself, things like that. And 389 Male 56
it [ref. EnCoRE] also gave me the opportunity to reach out to other folks like over the phone.
Because it’s like I’m one of the type of person that I will avoid even a telephone conversation but
it helped me to be able to pick up the phone and be able to talk to somebody on the other line and
be able to transfer what I’m trying to get across to get my point across.”
24 “ … when I approach a person now, I—I’m not—I’m not–not ashamed to look them in the face or 988 Male 63
just start talking about something, a subject or something, you know. Just talk–come straight out
with what I’m trying to get to.”
25 “I started to appreciate the fact that it [ref. EnCoRE] was getting me out to do stuff in the 672 Female 48
neighborhood and I don’t need to be as reclusive as I’ve been … It made me open my eyes and
realize how much I’ve been missing because of my conditions.”
26 “[I learned] that I could do whatever I put my mind to.” 389 Male 56
27 “It [ref. EnCoRE] got us more involved in how to talk to other people and how to listen to other 559 Male 58
people, interact with other people the right way because I have been doing it a lot of the wrong
way … I was trained as a military police investigator, so I went right to the point on a lot of
things, and then I’d go back on something and hit them back against something in a different way
but the same question … And, that’s the way I talk to someone, I’m always looking at that
instead of … being polite or whatever. I had to learn to kind of de-militarize myself, and this
helped.”
28 “It [ref. EnCoRE] helped you do things that were impossible … [to realize] you can make them 119 Male 55
happen. You don’t have to wait for things to happen. They can get your hands-on doing things
that were always put off or something. Always avoiding, always procrastinating, dawdling,
dragging feet. Just go and do them. Stop delaying.”
Table 2 (continued)
Random
Row Quotation number Gender Age
Phase 3: Extended use of skills to support continued social and community activities
39 “But now I am planning … like recreational things. I go to the movies, go skating, go play tennis, 982 Female 63
go bowling, stuff like that.”
40 “I’m volunteering … I go over there two to three times a week, a few hours a day. I’m going back 559 Male 58
whenever I leave here … I got off my butt and started doing something that involves me because
that’s part of my recovery also. That’s what I see, and it helps. [ref: EnCoRE] allowed me to do
that. It allowed me to reach out.”
41 “I’ve been actually visiting more, I’ll say but I still, kind of like with my family and my close 833 Male 55
friends, you know, but I have been meeting other people in the process. So you know, I went out
and shot pool, I met people then, so I met people like that and it was a good experience.”
Note. EnCoRE = engaging in community roles and experiences; VA = Veterans Affairs.
confidence reduced the inhibiting uncertainty about interpersonal right way” or learned to “express themselves,” in areas or ways they
interactions that many participants experience. did not know before. Participant 389 (male, age 56) explained:
[I learned] that I could do whatever I put my mind to.
Taken together, these themes illustrate a process of change. Skill
Theme 2: The Group Atmosphere Offered a
acquisition was made possible by a positive group atmosphere
Combination of Support and Accountability That combining encouragement with accountability. This content and
Helped Participants Feel Comfortable and process combination resulted in interviewees feeling more capable
Motivated Learning and Practicing New Skills and less inhibited, allowing them to try new things. The mastery
Participants (Table 2, Rows 13–15) appreciated both support and from repeated practice furthered their confidence and, for some, led
accountability from facilitators and from other group members. to shifts in thinking about what is possible for social interactions in
Feeling heard, understood, respected, and accepted supported skill their lives.
acquisition and practice. Participants were motivated to complete
their action plans but felt good knowing that if they did not, the Phase 2 Results: Engagement Stories
group would support them in refining their plan and completing it
the next time. Examples of participating in social/community activities illustrate
Participants (Table 2, Rows 16–18) described characteristics of the the implementation of skills and confidence into real-life contexts.
facilitators as contributing substantially to this helpful environment— Findings from Phase 2 coding of these “engagement stories”—
being a good listener, having a positive attitude, being supportive. briefly told specific events of significance to participants—are
Participants also valued facilitators being “tough” (gently challeng- presented in Figure 1. Participants (Table 2, Rows 29–33) partici-
ing, holding people accountable) while also being encouraging and pated in new social activities and increased their participation in
supportive. As Participant 784 (male, age 60) stated about the group existing social relationships. For example, Participant 886 (male,
facilitator: [she] said that the group would kind of be like a kind of a age 60) said: I did a few things that I don’t normally do. I went out to
nudge group to try and push us into our action plans. So, it did help. the community center and I interacted with other people while I was
Participants (Table 2, Rows 19–20) mentioned that a Veteran as a out. Others (Table 2, Rows 34–38) reflected using skills they learned
group facilitator added to the comfortable, understanding atmosphere in EnCoRE to plan enjoyable activities. Participant 193 (male, age
of the groups. Participants felt that the Veteran facilitator could relate 62) related: Going visiting and visiting with my daughters and my
to their experience and that they could relate to her. sisters and family members. You know, going places, you know … I
wasn’t socializing as much until I went to these classes [ref.
EnCoRE], and then I started socializing a little bit more. These
Theme 3: Feeling More Skilled and Gaining stories show that it is the synergy of the skills/strategies and the
Confidence in Using Those Skills Led Participants to group process that helps participants try more and engage more in
Anticipate More Success in Social Interactions and social and community activities.
Gave Them the Confidence to Do Things
Having learned skills and gained confidence, participants (Table 2, Phase 3 Results. Extended Use of Skills to Support
Rows 21–24) were much more willing to try new activities. They felt
Continued Social and Community Activities
less overwhelmed, more capable, and saw social activities as more
“doable.” As Participant 333 (male, age 53) explained: That’s all I Some participants (Table 2, Rows 39–41) offered that they carried
had to do is get up off the couch and go, and just going there is not with them knowledge and confidence gained in EnCoRE that they
going to hurt me. Once I get there, I feel okay. Many participants could do activities again when desired. For example, Participant 982
(Table 2, Rows 25–28) also described an important realization—that (female, age 63) said: But now I am planning … like recreational
there are more positive ways to interact in the world. Some talked things. I go to the movies, go skating, go play tennis, go bowling, stuff
about unlearning old negative habits or learning new ways of like that. Because the interviews did not expressly explore this topic,
thinking. Several felt that they had learned how to do things “the the data are limited to what interviewees reported spontaneously.
90 BENNETT, KUYKENDALL, HARVEY, AND LUCKSTED
Figure 1
Summary of Phase 2 Coding (Engagement Stories)
Elements of EnCoRE Identified in Engagement Stories
80
67
70
60
Axis Title
50
38
40
30 25
20
20 11 13 12 11
5 5 8
10 4 1 2 4 4
0
Axis Title
29
30
25
20 17
15 12 13 12
10 7 6
5
0
Initiate new Increase Initiate new Increase Practice life Reduce Positive Other
social activity existing relationship existing maintenance interpersonal internal
social activity relationship conflict change
Axis Title
Nonetheless, these anecdotes raise the possibility that participants helped many surmount feelings of low interest and low motivation.
experienced a lasting shift in their perspective on social interactions. In-session practice led to real-life trying, which led to overcoming
discomfort, which led to increased confidence to try activities again.
Our results underline previous findings that interventions that teach
Discussion new skills, systematically plan for participants to implement them in
This qualitative study explored the experiences of Veterans living their lives, and problem-solve based on participants’ actual experi-
with schizophrenia and negative symptoms who participated in a ences support social and community engagement. For example,
program to increase social and community participation. In semi- Social Skills Training, an evidence-based practice that breaks down
structured interviews, participants discussed the skills they learned, social skills into component parts and supports skills acquisition
the confidence they gained, and the ways they used the skills to through repeated practice (Bellack et al., 2004), yields lower ratings
increase participation in social and community activities. These of negative symptoms and improvements in functioning (Turner
findings can be applied in several ways in psychiatric rehabilitation et al., 2018). Behavioral activation approaches that include sched-
settings to prepare and support individuals to increase community uling rewarding activities, daily monitoring of activity completion,
engagement. First, the process of learning skills, planning to use and engaging social supports to overcome barriers have been found
them, implementing them, and returning to the group for input to improve depression, substance use, and other psychiatric and
INCREASING COMMUNITY ENGAGEMENT IN SCHIZOPHRENIA 91
medical conditions (Daughters et al., 2010, 2018; Hopko et al., behavioral activation-based activity planning may be a fruitful
2011; Magidson et al., 2014; Mazzucchelli et al., 2009; Pagoto et al., strategy and, as noted above, can be easily learned by diverse
2013). In EnCoRE, integrating Social Skills Training and behavioral providers, offering an approach that is person-centered and recov-
activation with motivational interviewing seems to support the ery-oriented. Participants identified group support and accountabil-
transition from learning a skill to trying something new (Balán ity as impactful. Being around Veterans living with schizophrenia
et al., 2016). All of these approaches can be delivered in psychiatric and having a Veteran group interventionist helped them feel that
rehabilitation settings. Training in these practices is standardized, others could relate to their experience. These features could be
widely available, and applicable to the full range of professionals replicated across psychiatric rehabilitation and other mental health
who work in these settings. treatment settings.
Second, negative symptoms are often viewed as a sign of laziness Study strengths include the richness of interviews that focus on
or disinterest, or as irremediable characteristics of schizophrenia how learning via a structured intervention can support behavioral
(Correll & Schooler, 2020; Galderisi et al., 2018; Thirthalli, 2021). change. Hearing that EnCoRE was acceptable and beneficial, in
However, people living with schizophrenia often report limiting participants’ own words, helps to highlight the impact that a
their social and community involvement due to stigma, discomfort psychosocial intervention can have supporting the changes that
around others, and a lack of confidence. Gee and colleagues (Gee participants perceive as meaningful; there is increasing use of
et al., 2019) interviewed 24 young adults receiving services for early qualitative interviewing with trials to support this deeper degree
psychosis about their experience with negative symptoms and found of understanding (DiBenedetti et al., 2018). Quantitative measures
that interviewees reported avoiding social situations due to internal- are selected based on their use in previous research but run the risk of
ized stigma and feeling shame about having a serious mental illness. not capturing the most important changes that participants make. For
In our interviews, EnCoRE participants reported increased confi- example, many measures of social functioning in serious mental
dence with social engagement and increased social behaviors. This illness, including some of those utilized in the parent trial, award
corroborates that for individuals living with negative symptoms, higher ratings for employment, independent living, and highly
skills, and confidence can be addressed successfully via psychoso- social activities (e.g., being around many people). These aspects
cial interventions. Practitioners can integrate confidence building of functioning may be less relevant for some people living with
into rehabilitation work in ways that support community engage- schizophrenia, especially those who are older and of limited finan-
ment by providing education about the process our study partici- cial means such as those in our trial. Here, qualitative interviews
pants articulated: trying an activity leads to positive feelings which captured detailed information on participants’ experiences and
leads to more activity which leads to confidence, and so on. That is, illustrate how learning new skills within a supportive group atmo-
people seem to build confidence by trying something that makes sphere can lead to more social and community participation.
them uncomfortable or that they have avoided and seeing that they Several weaknesses should be noted. Our findings are derived
can do it and enjoy it. from the experiences of only 36 adults living with schizophrenia and
Third, participants reported that learning skills helped them try negative symptoms. Because the intervention was designed to help
new activities which helped them build confidence for continued people who, because of their illness, struggled with anhedonia
participation. This is in line with findings that defeatist perfor- and asociality, we followed guidelines (Galderisi et al., 2021)
mance beliefs, negative thoughts about one’s ability to success- that suggest a minimum level of clinically meaningful negative
fully engage in and complete goal-directed activities (Grant & symptoms for study entry. We also excluded individuals with
Beck, 2009; Ventura et al., 2014), may influence negative symp- substance use disorders. Although the components of EnCoRE
toms and associated poor functional outcomes (Campellone et al., have been tested in samples of people with schizophrenia generally
2016). The quantitative findings from this study’s parent trial (Rabinowitz et al., 2013) and in those with substance use disorders
(citation blinded for article review) indicated possible efficacy (Martínez-Vispo et al., 2018), our eligibility requirement may limit
of EnCoRE at posttreatment among those with greater dysfunc- the generalizability of the findings or represent a missed opportunity
tional attitudes at baseline ( p = .0526) that continued at a 3-month to collect data on patients with comorbid substance use disorders as
following, albeit with attenuated significance ( p = .0877). Our part of their clinical presentation. Future research could study
findings and those in the literature support having proactive EnCoRE utilizing broader inclusion criteria to determine if indivi-
discussions about how building confidence can support improved duals with these conditions can benefit. In addition, we conducted
social and community participation. Integrating explanation of one–time qualitative interviews to gather stakeholder perspectives. A
these confidence and avoidance dynamics and strategies for over- fuller process evaluation that includes follow-up stakeholder input,
coming them into psychoeducation and other recovery-related examination of facilitators of and barriers to EnCoRE delivery, and
programming within psychiatric rehabilitation services could the fit of EnCoRE in different rehabilitation and mental health
help individuals living with schizophrenia develop greater inter- treatment settings (Skivington et al., 2021) would provide critical
personal and social functioning. information for wider scale implementation. The fact that participants
Finally, negative symptoms are challenging to address in treat- were U.S. military veterans may limit generalizability; we recom-
ment (Correll & Schooler, 2020; Thirthalli, 2021). Our conversa- mend future research to replicate our fundings among non-Veteran
tions with clinicians regarding the VA treatment context for samples. This qualitative interview study was conducted in conjunc-
Veterans living with schizophrenia and negative symptoms echoed tion with a research trial in which research interventionists delivered
commonly cited barriers: practical obstacles (e.g., lack of money EnCoRE. In future research, the practical potential of EnCoRE as an
and transportation), low support outside of the treatment setting, and effective intervention for negative symptoms associated with schizo-
frustration about what to do when encouragement and practical phrenia needs to be tested in the context of routine clinical services
suggestions are not sufficient. Pairing skills training with focused such as under a pragmatic trial design (Ford & Norrie, 2016).
92 BENNETT, KUYKENDALL, HARVEY, AND LUCKSTED
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https://doi.org/10.1177/1098214005283748
Thomas, E. C., Despeaux, K. E., Drapalski, A. L., & Bennett, M. (2018).
Person-oriented recovery of individuals with serious mental illnesses: A Received May 8, 2022
review and meta-analysis of longitudinal findings. Psychiatric Services, Revision received October 12, 2022
69(3), 259–267. https://doi.org/10.1176/appi.ps.201700058 Accepted October 14, 2022 ▪