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Application of Community-Engaged Research to inform the Development and Implementation of a Peer-delivered Mobile Health Intervention for Adults with Serious Mental Illness (Preprint)

DOI:10.2196/12380
Authors:
Karen Fortuna at Geisel School of Medicine at Dartmouth
Karen Fortuna
Paul Barr
Paul Barr
Paul Barr
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Carly M Goldstein at Alpert Medical School - Brown University
Carly M Goldstein
Robert Walker
Robert Walker
Robert Walker
  • This person is not on ResearchGate, or hasn't claimed this research yet.
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Background: Involving certified peer specialists in all phases of intervention development and research is a high priority to advance peer-delivered services. Certified peer specialists are individuals with a lived experience of a mental illness, and they are trained and accredited to provide Medicaid reimbursable mental health services. Community-engaged research can facilitate the development and implementation of peer-delivered interventions; however, little is known about the processes. We present our application of community-engaged research to inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with serious mental illness. Objective: The aim of this study was to present a framework that can be used as a guide for researchers and certified peer specialists to develop and implement peer-delivered mHealth interventions in community settings. Methods: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include the following: (1) develop a clear understanding of the purpose, goal, and population involved in community change; (2) become knowledgeable about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration. Results: Overall, 4 certified peer specialists participated in all phases of intervention development and research. Individuals who participated in the Academic Researchers-Certified Peer Specialists' mHealth Research Continuum collaborated on 5 studies advancing peers' roles in services delivery using mHealth and secured grant funding from a foundation to sustain their study. The Academic Researchers-Certified Peer Specialists' mHealth Research Continuum has created a rare environment of inclusion by combining scientific expertise and certified peer specialists' expertise to achieve a shared vision. Conclusions: This study delineates a process by which academic researchers and certified peer specialists participated in community-engaged research to develop and implement peer-delivered mHealth interventions in community settings.
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Academic researchers and certified peer specialists' infrastructure for full participation and shared decision-making Certified peer specialists' research capacity building. Aligned with the principle of community-engaged research to develop community capacity, academic researchers worked with certified peer specialists' to develop peers research capacity [5]. To prepare certified peer specialists to be involved in research, the principal investigator met with certified peer specialists on the scientific team and also the peer direct service team. Orientation included an open discussion of the current state of the evidence, models for developing behavioral interventions, intervention components, the role of peer interventionists and the peer researcher, and defining expectations of a culture of openness, trust, respect, commitment, flexibility, adaptation, and willingness to compromise. Capacity building included training on the following: (1) research terminology such as "pre/post tests", "pilot", "outcome measurement"; (2) research procedures such as participant safety, informed consent, and data collection; (3) working collaboratively; (4) shared decision-making; and (5) respecting diversity. Instructional methods included experiential learning, role-play, and teach-back method. Academic researchers solicited feedback on how to improve research training. Once trained, certified peer specialists directed scientific efforts related to the following (1) text message dose; (2) recruitment-deciding on the location, identifying and hiring, training certified peer specialists using academic profiling, and implementation; (3) identifying outcomes of interest; (4) modified research questions (see below for detailed description); (5) resource allocation-defining equitable pay for certified peer specialist, caseload and hours required; (6) interpretation of the findings; and (7) dissemination.
Academic researchers and certified peer specialists' infrastructure for full participation and shared decision-making Certified peer specialists' research capacity building. Aligned with the principle of community-engaged research to develop community capacity, academic researchers worked with certified peer specialists' to develop peers research capacity [5]. To prepare certified peer specialists to be involved in research, the principal investigator met with certified peer specialists on the scientific team and also the peer direct service team. Orientation included an open discussion of the current state of the evidence, models for developing behavioral interventions, intervention components, the role of peer interventionists and the peer researcher, and defining expectations of a culture of openness, trust, respect, commitment, flexibility, adaptation, and willingness to compromise. Capacity building included training on the following: (1) research terminology such as "pre/post tests", "pilot", "outcome measurement"; (2) research procedures such as participant safety, informed consent, and data collection; (3) working collaboratively; (4) shared decision-making; and (5) respecting diversity. Instructional methods included experiential learning, role-play, and teach-back method. Academic researchers solicited feedback on how to improve research training. Once trained, certified peer specialists directed scientific efforts related to the following (1) text message dose; (2) recruitment-deciding on the location, identifying and hiring, training certified peer specialists using academic profiling, and implementation; (3) identifying outcomes of interest; (4) modified research questions (see below for detailed description); (5) resource allocation-defining equitable pay for certified peer specialist, caseload and hours required; (6) interpretation of the findings; and (7) dissemination.
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JMIR Preprints Fortuna et al
Application of Community-Engaged Research to
inform the Development and Implementation of a
Peer-delivered Mobile Health Intervention for Adults
with Serious Mental Illness
Karen Fortuna, Paul Barr, Carly Goldstein, Robert Walker, LaPrincess Brewer,
Alex Zagaria, Stephen Bartels
Submitted to: Journal of Participatory Medicine
on: October 02, 2018
Disclaimer: © The authors. All rights reserved. This is a privileged document currently under peer-
review/community review. Authors have provided JMIR Publications with an exclusive license to
publish this preprint on it's website for review purposes only. While the final peer-reviewed paper
may be licensed under a CC BY license on publication, at this stage authors and publisher
expressively prohibit redistribution of this draft paper other than for review purposes.
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
Page 1/37
JMIR Preprints Fortuna et al
Table of Contents
Original Manuscript ............................................................................................................................................................................. 5
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
Page 2/37
JMIR Preprints Fortuna et al
Application of Community-Engaged Research to inform the
Development and Implementation of a Peer-delivered Mobile Health
Intervention for Adults with Serious Mental Illness
Karen Fortuna1, Ph.D.; Paul Barr1; Carly Goldstein2; Robert Walker3, Certified Peer Specialist; LaPrincess Brewer4,
M.D.; Alex Zagaria5; Stephen Bartels6, M.D.
1 Dartmouth College, Department of Psychiatry, , Lebanon, United States.
2 Brown University, , , Providence, United States.
3 Department of Mental Health, , , Boston, United States.
4 Mayo Research, , , St. Paul, United States.
5 Dartmouth-Hitchcock, , , Lebanon, United States.
6 Harvard John A Paulson School of Engineering and Applied Sciences, Harvard University, , Cambridge, United States.
Corresponding Author:
Karen Fortuna, Ph.D.
Dartmouth College
Department of Psychiatry
46 Centerra Pkwy suite 200
Lebanon
United States
Phone: 1 6036533430
Email: karen.l.whiteman@dartmouth.edu
Abstract
Background: Involving certified peer specialists in all phases of intervention development and research is a high priority to
advance peer-delivered services. Community-engaged research can facilitate the development and implementation of peer-
delivered interventions; yet, little is known about the processes. We present our application of community-engaged research to
inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with SMI.
Methods: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer
Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include: (1)
develop a clear understanding of the purpose, goal and population involved in community change; (2) become knowledgeable
about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-
determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and
develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration.
Results: Individuals in participating in the Academic Researchers-Certified Peer Specialists’ mHealth Research Continuum
collaborated on five studies advancing peers’ roles in services delivery using mHealth and secured grant funding from a
foundation to sustain their work. The Academic Researchers-Certified Peer Specialists’ mHealth Research Continuum has
created a rare environment of inclusion through combining scientific expertise and certified peer specialists’ expertise to achieve
a shared vision.
Conclusion: This manuscript delineates a process by which academic researchers and certified peer specialist can use as a guide
to participate in community-engaged research to develop and implement peer-delivered mHealth interventions in community
settings.
(JMIR Preprints 02/10/2018:12380) DOI: https://doi.org/10.2196/preprints.12380
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JMIR Preprints Fortuna et al
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JMIR Preprints Fortuna et al
Original Manuscript
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
Page 5/37
JMIR Preprints Fortuna et al
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Abstract
Background5                     
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https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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9: !$
= /
                    
$
Methods:     &     
   !      $     
           5  9 (:            
&?9):/ 
?9,: ?9.:
?91: ?92:
?98:?9@:3?9>:
$
Results: %           
$         !A
A
    /$ = 
!A
3A3
$
Conclusion: = 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al

$
Key words: &&&
&
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
Background
     9!:  
  B(C$=
&& 
!B(C$   &    
    
   B)C$ =/ &
  / 
                 $  DE      
 3
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 /,.B.C$
         B.C& 
  /    
B.C$= /
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D / 
3&&
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3& 9$$&
& F:$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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?9.:?91:  ?
92:?98:?
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
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      $            
&
!&G$%3&
? & !3
           $ &
          F          
B8C$%3&
3
 /       B@C$  & 
 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
 3H$
  &     
 
 !$= /
      
$
Preliminary Research before Active Engagement with the Peer Community
Defining the problem from peers’ perspective.      
  &               
 3   !     
B1C$ =&
 )28  ,@ $=    
        &  &  &        
 !B>C$' 
/A$=
I&
B>C$
   & 
 / AB1C
     !$ !      
                    B1C$   '  
&
$= 7!
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
!B(6C$! 
B1C$%3&
G&
/// 
$&
        !      
$    &      3  &              
                    /
$           
%,$
Academic researcher capacity building.      
   /     B1C&  
 /     $  A  
A&&
& 9$$&Reaching Across: Mental
Health Clients Helping Each Other B((C:&          
    $ '       
/ J /  
$
Mapping certified peer specialists’ assets$ 73&       
A$%3&B CF
      &        @6     &  
& /&&
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
&& 3$
,.B.CJ
  D E  D E$  &     
/$
&  / 
$59(:
   ? 9): ?9,: I
?9.:?91:?92:
?  98:                      ?  9@:
F? 9>: ?9(6: 3?
9((:  B(6C$
%&            
9>.$@K?nL)1,:&
B()C$=
 &
     9 % (      
!A:$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
Figure 1.
Community Map of Certified Peer Specialists’ Assets
Potential power differential. 73&           
/        B
 C$= $
=        3  ,6  $             
&/ 
   A&& &       
    $ % 3&   
      /                    J
      &         B(,C$   &  
       I  
Certified Peer Specialists
Willing to use
technology to
provide self-
management
services
Willing to use
technology to
provide self-
management
services
Medicaid
rembursiable
services
Medicaid
rembursiable
services
Large and skilled
workforce
(Implementation
potential)
Large and skilled
workforce
(Implementation
potential)
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
 $
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&  & &   B(,(2C    
 $!&
 B(,
(2C with     $  =&        &      
         3   
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  
3?  &  
    
F  3    
$
Inclusion
(:%  
$
): F      
    
   
    
   
$
Self-determination
(:   
/  
A$
):    
    
DE

  /
&
    
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
      
    
$
Early Phase Research Aimed to Foster Certified Peer Specialist Engagement
Establishing relationships and developing trust$     
          
B1C& $
=   &     
    $ =    
/            
3 $=
9:
B(8C$
                $        
                      
    !  16M $ =    
 !& !/
B(@C&&
$"
$=
G !B(8C$
=                     
$ =  &         
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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$
eModules$=   
 !& /&
    $          3    /  
/$   /   
9:
     $    9( N ):  O
' -5 !     
              ?  9,  N.: 5
!  ? 91: ! P5 
?92:+!!
'5  ? 98: !5 +
  F   ? 9@:    
5  ?9>: 
!!!5
?9(6: !&!5
3 ?9((:5
?9():-
7!5
/$
Smartphone App.=9: 
 /    
$  & informal 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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J$=
    /& &   B(>C$ =  
G9(: /&9):&9,:
DE/&9.:
/&91:$+
   G       A G
 $ =          3
 $
0 9:& 
  /
$B)6C
/9$$&
 :B(>C$=/ &  
/ B(>C$
 $ /
/9:9:$ /
 /59(:?9):
?9,:
?9.: ?91: 33
  ?92://?98:3
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
?9@: 
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///&//&
DI/E$&
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      &        3&      
 !$'
             &          
? 
    !   3       
 $
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
Full Academic Researchers-Certified Peer Specialists Partnership
Establishment of a formal academic researchers-certified peer specialist
partnership.     &  
 B1C$ '/
     3    
$ D /E       
      B)(C$ '    
QQ#B
 C$    Q# 9$$&  /:  
& # 
  A  /       $ =
 /            
 $
'QQ#&   
& /&&&
&B C$'
A !$=& &
 !$
  &       &    
D=E$& I
=A&&$0&
 &    /&    &   
&     &      B   C
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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                    
$
Developing an infrastructure for full participation and shared decision-making
authority. =  &      A
 B1C$ '   
   9$$& (, 
/ (   )6 / :$ '    
A 5
$= /$=
        G   
&/ 
& /    & 
9   :&  
9%):$
Feedforward
System
Full
participation
and shared
decision-making
authority
Academic-
Researchers
& &&
Scientific
Methods
Community
Gatekeeper
Certified Peer
Specialists
Disseminating Results
!&& 
 G&

https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
Figure 2.
Academic researchers and certified peer specialists’ infrastructure for full participation
and shared decision-making
Certified peer specialists’ research capacity building.   
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&&
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3  & & & &3&&
$  59(:
DHE&DE&DE?9):
&&?9,: /?9.:
/?91:$3
&&/$  / 
$
0& 
9(:3?9):J&&
&?9,:
?9.:F 9   :? 91: 
JF&F?92:
?98:$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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Ongoing Opportunities for Academic Researchers-Certified Peer Specialists’ Co-learning
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              $  +      
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      $ !&         
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  3  F$ =   F 5 D 
3=/RE=F 
  3 D  3  =   /
&& &RE
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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B)(C:& G 3?&
   F 3  $   
3 
J $
Rapid iterative intervention co-design. =    
A       3  & & 
=  !H$0
       B))C$ =   
                 
!9!:B),C$=!&(1
 B),C$    & &  $
'      &  
&&F
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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A&     
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+     =   
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Engaging certified peer specialists to co-facilitate dissemination.  
B1C& 
 $ 
  /                 
 $0
 $
A & G     
%/& #/= $= 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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&  / 
$
Long-term collaboration between academic researchers and certified peer
specialists. 
  B1C&                
/$                 
& B  C   
 $  B  C 
& A     
 $  / 
 && 
$


$'
 /$ &
                     
3 A39
!%,:$
Preliminary
Research before
Active
Engagement with
Peer Community
Early Phase
Research Aimed to
Foster Peer
Engagement
Full Academic
Researchers-
Certified Peer
Specialists
Partnership
On-going
Opportunities for
Academic
Researchers and
Certified Peer
Specialists’ co-
Sustainability
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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learning
KNOWLEDGE
BUILDING
CONSULTATION FULL
PARTNERSHIP
CO-LEARNING LONG-TERM
COLLABORATIO
N
Defining the
problem from
peers’ perspective
National online
survey
Principles of
community
engagement:
9(:  
  
  &  
  
  
  ?
9):  

Establishing
relationships and
developing trust
Academic
researchers
developed the first
iteration of the
mHealth intervention
with certified peer
specialists as
consultants.
Principles of
community
engagement:

 

Establishment of a
formal academic-
peer partnership A
community
gatekeeper
advocated for
academic
researchers’
inclusion in the
certified peer
network—allowing
for ease of access
and the opportunity
to develop a trusting
relationship.
Principle of
community
engagement:
  

Reciprocal capacity
building and
learning
Certified peer
specialists assist in
the modification of
research questions,
adding assessment
measures, and
identifying
mechanisms. Certified
peer specialists
guided effort
identifying research
sites, acceptable
screening tools,
hiring, training, and
managing peers.
Principle of
community
engagement:
'  3  
  

    
  
    

Long-term
Collaboration
Creation of a rare
environment of
inclusion through the
combination of
scientific expertise
and peer expertise.
Grant funding for
future collaborative
projects was secured.
Principles of
community
engagement:


Researcher
capacity building
Map community
assets and
examining potential
power differential.
Principle of
Developing an
infrastructure for
full participation
and shared decision-
making authority
Formal meetings
with scientific team
and the certified peer
Iterative mHealth
intervention co-
design
Peers assisted in
redesigning the
curriculum and
identified
implementation
Q
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
community
engagement:
+
/ 
  

specialists direct
service team.
Principle of
community
engagement:
  
A

barriers and
facilitators to using
mHealth in
environmental
contexts.
Principle of
community
engagement:
'  3  
  

    
  
    

QCertified peer
specialists research
capacity building
Training on:
research terminology
and procedures;
working
collaboratively;
shared decision-
making; respecting
diversity.
Instructional
methods included
experiential learning,
role-play, and teach-
back method$
Principle of
community
engagement:
+
/  

Engaging peers to co-
facilitate
dissemination
Certified peer
specialists inclusion in
national
presentations, peer-
reviewed publications,
and delivering social
media messages.
Principle of
community
engagement:
  

Q
Q Q Q
Action Step:
(:  

Action Step:
(: 
 
Action Step:
(: %  
 
Action Step:
(: 
F
Action Steps:
(: 
 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
  
  
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  
  
    
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  
 !
  I  
$
): 
  
  
    
D  
    
  
  
 !E
  
  
   
 
  
    
    
    
   
$
): 
 
=

9    :
  
$
,:  

    
    
  
?  

$
.:  

  
   
  $
  
  
    
  


$
    
  
  
$
): 
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  
    
$
,: 
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  
 $
.: 
 
/   
  
$
5
    
    
  F&
 
&

  &

  
&  
9$$&    
 
&  &
&  
  :&
  
9$$&  
F    
  
&  
F:?

?  
  9$$&

  
  
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  
:$
):    
  &  
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  

    
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  
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$
$
): 
 
    
9$$&  
  
  
?    
  
    
:$
,: 
 
  
$
Figure 3.
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
Framework for academic researchers-certified peer specialists’ mHealth research continuum
designed to simultaneously inform the development and implementation of a peer-delivered
mHealth intervention for adults with serious mental illness.
Discussion
=         /  
$</
         one  
9$$&:& 
$ /& F
    &        &       &
F&   &   
&&   $ %&     $ 0
 /
$
   3 
           3B(>C$
           
  3/$% 3&  
     F              F
&& 
A& &&  & 
 F&  $   3 /&  
           ! 
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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     3  3    
$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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Acknowledgements
$ %A      7     9=,)
68,11,((:+  + %  7!
 $ $ -     7 & #&  +  9"),
#(,2@.1:$ $ +      7    =
!97=!: =!9=!&- 
"#)=66),8>:&7$= 3
 7$=
&&&$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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Conflict of Interest
=$
https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
Page 33/37
JMIR Preprints Fortuna et al
References
($ !+$$*(>>,?()?
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)$ #&&PSG-&!$
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@$ $Q(>@@$=$Q'&5=7
?(>>@?5HH$H(6$(8))2H(6>$
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https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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JMIR Preprints Fortuna et al
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https://preprints.jmir.org/preprint/12380 [unpublished, non-peer-reviewed preprint]
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... Partnering with people with SMI to co-design smartphone apps may therefore improve engagement, adoption, and consequently mental health outcomes. Co-design partnerships include various participatory stakeholder methods including focus groups, community engagement studies, and community-based participatory research [14]. Bucci et al. (2019) suggest that digital tools such as a smartphone application with high acceptability and likelihood to fit the needs of service users will have to consider the end-users' perspectives to increase uptake [32]. ...
... The goals of CoP vary and can be based on the exchange of resources, transferring of skills, or meeting disparities. Academic partnerships have been documented in several disciplines to meet global health disparities [10], such as in business to accelerate innovation [9] and in behavioral health research to develop and implement mHealth interventions [14]. ...
... In many settings, peer support specialists work as part of a team with other professionals. In addition to the practitioner role, several studies have engaged peer support specialists as active research partners, involved in all phases of research, from conceptualizing research projects to reporting, validation, and dissemination of findings [14]. Whereas few studies exist that are led by peer specialists, emerging researchers in the field are engaging and developing a mental health peer-informed research and continue to engage peer support specialists with some having principal investigators as mental health peers. ...
Peer and Non-Peer Academic Scientists and Peer Support Specialist Community of Practice Stakeholder Engagement to Advance the Science of Peer Support
Article
Full-text available
Community of Practice, a community-engagement method that encourages a group of people to interact regularly towards a common goal, may promote satisfying experiences in patient-outcomes research among marginalized populations. Peer support specialists are increasingly being involved in peer-informed mental health research due to their lived experiences of mental illness and are an asset in co-designing healthcare programs along with researchers. In 2015, ten scientists and ten mental health service users joined as a Community of Practice that trained to engage in patient-centered outcomes research. The group has so far has presented at 20 conferences, published three book chapters and 30 peer-reviewed publications, and developed two smartphone applications. Of note are the co-production of a smartphone application, a digital peer support certification program, an app decision support tool, and an instrument to assess the value of patient-research partnerships. Future research will assess the feasibility of incorporating more stakeholders to enhance research outcomes.
... CPS are also increasingly involved in research-related activities (eg, recruitment, retention efforts, obtaining informed consent, collecting sensitive data, publishing findings in peer-reviewed journals [6]). For example, the Quality of Patient-Centered Outcomes Research Partnerships instrument was developed by researchers and CPS to offer quality improvement opportunities related to developing equitable research partnerships [7]. ...
... For example, the Quality of Patient-Centered Outcomes Research Partnerships instrument was developed by researchers and CPS to offer quality improvement opportunities related to developing equitable research partnerships [7]. Moreover, community-engaged research that includes CPS in all stages of research may also lead to the dissemination of study results to a wider audience by incorporating CPS in conferences and publications as well as by using social media to showcase results in a more digestible manner for service users of the mental health system and other CPS [6]. ...
... The outcomes of interest include change in knowledge and skills related to illness self-management, patient activation, and acute hospital events. As part of this study, researchers employed the Peer and Academic Partnership model, which has been described in detail elsewhere [6]. Briefly, CPS were hired and financially reimbursed to work as partners in the implementation of the randomized control trial detailed above. ...
Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study
Preprint
Full-text available
  • Mar 2021
BACKGROUND Certified peer support specialists (CPS) have a mental health condition and are trained and certified by their respective state to offer Medicaid reimbursable peer support services. CPS are increasingly involved as partners in research studies. However, most research ethics training in the protection of human subjects is designed for people who, unlike CPS, have had exposure to prior formal research training. OBJECTIVE The aim of this study is to explore the perspectives of CPS in completing the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. METHODS A total of 5 CPS were recruited using a convenience sample framework through the parent study, a patient-centered outcomes research study that examined the comparative effectiveness of two chronic health disease management programs for people with serious mental illness. Participants independently completed the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. All participants completed 15 online modules in approximately 7-9 hours and also filled out a self-report measure of executive functioning (the Adult Executive Functioning Inventory [ADEXI]). Qualitative data were collected from a 1-hour focus group and qualitative analysis was informed by the grounded theory approach. The codebook consisted of codes inductively derived from the data. Codes were independently assigned to text, grouped, and checked for themes. Thematic analysis was used to organize themes. RESULTS Passing scores for each module ranged from 81%-89%, with an average of 85.4% and a median of 86%. The two themes that emerged from the focus group were the following: comprehension (barrier) and opportunity (facilitator). Participants had a mean score of 27.4 on the ADEXI. CONCLUSIONS The CPS perceived the research ethics online training as an opportunity to share their lived experience expertise to enhance current research efforts by nonpeer scientists. Although the CPS completed the online research ethics training, the findings indicate CPS experienced difficulty with comprehension of the research ethics online training materials. Adaptations may be needed to facilitate uptake of research ethics online training by CPS and create a workforce of CPS to offer their lived experience expertise alongside peer and nonpeer researchers.
... peer support specialists; community of practice; marginalized populations; PeerTECH Co-design partnerships include various participatory stakeholder methods including focus groups, community engagement studies, and community-based participatory research [14]. Bucci et al. (2019) suggest that digital tools such as a smartphone application with high acceptability and likelihood to fit the needs of service users will have to consider the Fortuna et al. ...
... The goals of CoP vary and can be based on the exchange of resources, transferring of skills, or meeting disparities. Academic partnerships have been documented in several disciplines to meet global health disparities [10], such as in business to accelerate innovation [9] and in behavioral health research to develop and implement mHealth interventions [14]. ...
... In many settings, peer support specialists work as part of a team with other professionals. In addition to the practitioner role, several studies have engaged peer support specialists as active research partners, involved in all phases of research, from conceptualizing research projects to reporting, validation, and dissemination of findings [14]. Whereas few studies exist that are led by peer specialists, emerging researchers in the field are engaging and developing a mental health peer-informed research and continue to engage peer support specialists with some having principal investigators as mental health peers. ...
Peer and Non-Peer Academic Scientists and Peer Support Specialist Community of Practice: Stakeholder Engagement to Advance the Science of Peer Support
Conference Paper
Full-text available
  • Oct 2021
Community of Practice, a community-engagement method that encourages a group of people to interact regularly towards a common goal, may promote satisfying experiences in patient-outcomes research among marginalized populations. Peer support specialists are increasingly being involved in peer-informed mental health research due to their lived experiences of mental illness and are an asset in co-designing healthcare programs along with researchers. In 2015, ten scientists and ten mental health service users joined as a Community of Practice that trained to engage in patient-centered outcomes research. The group has so far has presented at 20 conferences, published three book chapters and 30 peer-reviewed publications, and developed two smartphone applications. Of note are the co-production of a smartphone application, a digital peer support certification program, an app decision support tool, and an instrument to assess the value of patient-research partnerships. Future research will assess the feasibility of incorporating more stakeholders to enhance research outcomes.
... The interview guide was codesigned with two peer support specialists using the Peer and Academic Model of Community Engagement. 17 The interview guide covered topics related to perspectives on community engagement to inform the software development lifecycle of digital interventions for people with SMI. The interview guide included four broad questions and probes: The interview guide also focused on topics around privacy, confidentiality, and security concerns including three larger questions: 1) "Do you have any concerns about digital health interventions for the management of mental illness?" 2) "What are your thoughts on researchers monitoring your technology use?" 3) "What are your thoughts on replacing clinicians with technology? ...
... 9 A concrete solution to this issue is to include end-users in the software development lifecycle as partners (not only subjects in usability studies) in designing mHealth services. 17,26 Within the realm of smartphone app interventions, evidence indicates that a combination of a highly involved participatory research approach and user-centered design throughout the software development lifecycle has shown promising evidence of leading to the highest levels of engagement among people with SMI. 27 In addition to partnering with the industry to advance the science of Peer support in digital psychiatry, other promising means of implementing effective mental health technologies include the use of participatory research techniques in the development of digital mental health apps and peer support interventions. ...
Peer Support Specialists and Service Users’ Perspectives on Privacy, Confidentiality, and Security of Digital Mental Health
Article
Full-text available
  • Jan 2022
As the digitalization of mental health systems progresses, the ethical and social debate on the use of these mental health technologies has seldom been explored among end-users. This article explores how service users (e.g., patients and users of mental health services) and peer support specialists understand and perceive issues of privacy, confidentiality, and security of digital mental health interventions. Semi-structured qualitative interviews were conducted among service users (n = 17) and peer support specialists (n = 15) from a convenience sample at an urban community mental health center in the United States. We identified technology ownership and use, lack of technology literacy including limited understanding of privacy, confidentiality, and security as the main barriers to engagement among service users. Peers demonstrated a high level of technology engagement, literacy of digital mental health tools, and a more comprehensive awareness of digital mental health ethics. We recommend peer support specialists as a potential resource to facilitate the ethical engagement of digital mental health interventions for service users. Finally, engaging potential end-users in the development cycle of digital mental health support platforms and increased privacy regulations may lead the field to a better understanding of effective uses of technology for people with mental health conditions. This study contributes to the ongoing debate of digital mental health ethics, data justice, and digital mental health by providing a first-hand experience of digital ethics from end-users’ perspectives.
... Vast resources have been dedicated to data mining from biological specimens, extensive arrays of psychometric and physiological measures, and various types of radiological data (67,68). However, active engagement of stakeholders and research participants at every stage of project development from its earliest conception, through design, data collection and interpretation, to translation into policy and practice can improve the relevance, quality and impact of health research (40,(69)(70)(71)(72)(73)(74)(75)(76)(77)(78)(79)(80). ...
... Of course, in itself, the use of DiSPORA does not establish the conditions necessary for participatory research. Achieving true participation requires setting up and maintaining essential protocols and structures of governance for processes of partnership and collaboration that are well-described in the literature on participatory health research (69)(70)(71)(72)(73). ...
Play the Pain: A Digital Strategy for Play-Oriented Research and Action
Article
Full-text available
  • Dec 2021
The value of understanding patients' illness experience and social contexts for advancing medicine and clinical care is widely acknowledged. However, methodologies for rigorous and inclusive data gathering and integrative analysis of biomedical, cultural, and social factors are limited. In this paper, we propose a digital strategy for large-scale qualitative health research, using play (as a state of being, a communication mode or context, and a set of imaginative, expressive, and game-like activities) as a research method for recursive learning and action planning. Our proposal builds on Gregory Bateson's cybernetic approach to knowledge production. Using chronic pain as an example, we show how pragmatic, structural and cultural constraints that define the relationship of patients to the healthcare system can give rise to conflicted messaging that impedes inclusive health research. We then review existing literature to illustrate how different types of play including games, chatbots, virtual worlds, and creative art making can contribute to research in chronic pain. Inspired by Frederick Steier's application of Bateson's theory to designing a science museum, we propose DiSPORA (Digital Strategy for Play-Oriented Research and Action), a virtual citizen science laboratory which provides a framework for delivering health information, tools for play-based experimentation, and data collection capacity, but is flexible in allowing participants to choose the mode and the extent of their interaction. Combined with other data management platforms used in epidemiological studies of neuropsychiatric illness, DiSPORA offers a tool for large-scale qualitative research, digital phenotyping, and advancing personalized medicine.
... In developing PeerTECH, we employed the Peer and Academic partnership framework [22] and partnered with peer support specialists through intervention development. This partnership conducted a series of clinic-based usability tests to iteratively refine the intervention [22,23] and align PeerTECH with evidence-based design principles for people with SMI [23,24]. As described below, PeerTECH is a mobile technology platform designed to facilitate the delivery of evidence-based principles that have been shown to promote self-management in people with SMI (i.e., coping skills training, psychoeducation, medical management, relapse prevention planning, healthy behaviors, and peer support) [25,26]. ...
Feasibility, Acceptability, and Potential Utility of Peer-supported Ecological Momentary Assessment Among People with Serious Mental Illness: a Pilot Study
Article
Full-text available
To examine the feasibility, acceptability, and initial validity of using smartphone-based peer-supported ecological momentary assessment (EMA) as a tool to assess loneliness and functioning among adults with a serious mental illness diagnosis. Twenty-one adults with a diagnosis of a serious mental illness (i.e., schizophrenia, schizoaffective disorder, bipolar disorder, or treatment-refractory major depressive disorder) and at least one medical comorbidity (i.e., cardiovascular disease, obesity, diabetes, chronic obstructive pulmonary disease, hypertension, and/or high cholesterol) aged 18 years and older completed EMA surveys via smartphones once per day for 12-weeks. Nine peer support specialists prompted patients with SMI to complete the EMA surveys. Data were collected at baseline and 12-weeks. EMA acceptability (15.9%) was reported, and participants rated their experience with EMA methods positively. EMA responses were correlated with higher social support at 3 months. Higher levels of EMA-measured loneliness were significantly correlated with levels of social support, less hope, and less empowerment at 3 months. Lastly, those who contacted their peer specialist reported higher levels of loneliness and lower levels of functioning on that day suggesting that participants were able to use their peers for social support. Peer-supported EMA via smartphones is a feasible and acceptable data collection method among adults with SMI and appears to be a promising mobile tool to assess loneliness and functioning. These preliminary findings indicate EMA-measured loneliness and functioning are significantly predicted by baseline variables and such variables may impact engagement in EMA. EMA may contribute to future research examining the clinical utility of peer support specialists to alleviate feelings of loneliness and improve functioning.
Testing a digitally distributed method to recruit a network of community organizations to fight the consequences of the drug epidemic: A study in 13 American states
Article
  • Mar 2022
To mitigate the opioid epidemic, a concerted effort to educate, prevent, diagnose, treat, and engage residents is required. In this study, a digitally distributed method to form a large network of organizations was tested with 99 counties in regions with high vulnerability to hepatitis C virus (HCV). The method involved a cascade of contacts going from email to phone calls, to videoconferencing and measuring the number of contacts required, amount of time taken, and the proportion of success at recruiting at least one community organization per county. A recruitment period of 5 months and 2118 contact attempts led to the recruitment of organizations from 73 out of our 99 target counties. Organizations belonging to health departments required more attempts and time to recruit but ultimately enrolled at higher rates than did other organizations such as coalitions and agencies. Organizations from counties more (vs. less) vulnerable to HCV outbreaks required more attempts to recruit and, using multiple recruitment methods (e.g., emails, phone calls, and Zoom meetings), improved enrollment success. Overall, this method proved to be successful at remotely engaging a large‐scale network of communities with different levels of risk within a large geographic region.
Assessing a digital peer support self-management intervention for adults with serious mental illness: feasibility, acceptability, and preliminary effectiveness
Article
Full-text available
  • Jan 2022
Objective: To assess the feasibility, acceptability, and preliminary effectiveness of digital peer support integrated medical and psychiatric self-management intervention ("PeerTECH") for adults with a serious mental illness. Methods: Twenty-one adults with a chart diagnosis of a serious mental illness (i.e., schizophrenia, schizoaffective disorder, bipolar disorder, or treatment-refractory major depressive disorder) and at least one medical comorbidity (i.e., cardiovascular disease, obesity, diabetes, chronic obstructive pulmonary disease, hypertension, and/or high cholesterol) aged 18 years and older received the PeerTECH intervention in the community. Nine peer support specialists were trained to deliver PeerTECH. Data were collected at baseline and 12-weeks. Results: This pilot study demonstrated that a 12-week, digital peer support integrated medical and psychiatric self-management intervention for adults with serious mental illness was feasible and acceptable among peer support specialists and patients and was associated with statistically significant improvements in self-efficacy to manage chronic disease and personal empowerment. In addition, pre/post non-statistically significant improvements were observed in psychiatric self-management, medical self-management skills, and feelings of loneliness. Conclusions: This single-arm pre/post pilot study demonstrated preliminary evidence peer support specialists could offer a fidelity-adherent digital peer support self-management intervention to adults with serious mental illness. These findings build on the evidence that a digital peer support self-management intervention for adults with serious mental illness designed to improve medical and psychiatric self-management is feasible, acceptable, and shows promising evidence of improvements in clinical outcomes. The use of technology among peer support specialists may be a promising tool to facilitate the delivery of peer support and guided evidence-based self-management support.People with serious mental illness (SMI; defined as individuals diagnosed with schizophrenia spectrum disorder, bipolar disorder, or treatment-refractory major depressive disorder) are increasingly utilizing peer support services to support their health and recovery. Peer support is defined as shared knowledge, experience, emotional, social, and/or practical assistance to support others with similar lived experiences (Solomon, 2004). Most recently the definition also includes the provision of evidence-based peer-supported self-management services (Fortuna et al., 2020). Mental health peer support can augment the traditional mental health treatment system through providing support services to maintain recovery between clinical encounters (Solomon, 2004) and is classified by the World Health Organization as an essential element of recovery (World, Health, and Organization, About social determinants of health, 2017).
Cruciferous Vegetable Intervention to Prevent Cancer Recurrence in Non-Muscle Invasive Bladder Cancer Survivors: Development using a Systematic Process (Preprint)
Article
  • Jul 2021
Background: Bladder cancer is one of the top 10 most common cancers in the United States. Most bladder cancers (70%-80%) are diagnosed at early stages as non-muscle-invasive bladder cancer (NMIBC), which can be removed surgically. However, 50% to 80% of NMIBC cases recur within 5 years, and 15% to 30% progress with poor survival. Current treatments are limited and expensive. A wealth of preclinical and epidemiological evidence suggests that dietary isothiocyanates in cruciferous vegetables (Cruciferae) could be a novel, noninvasive, and cost-effective strategy to control NMIBC recurrence and progression. Objective: The aim of this study is to develop a scalable dietary intervention that increases isothiocyanate exposure through Cruciferae intake in NMIBC survivors. Methods: We worked with a community advisory board (N=8) to identify relevant factors, evidence-based behavior change techniques, and behavioral theory constructs used to increase Cruciferae intake in NMIBC survivors; use the PEN-3 Model focused on incorporating cultural factors salient to the group's shared experiences to review the intervention components (eg, the saliency of behavioral messages); administer the revised intervention to community partners for their feedback; and refine the intervention. Results: We developed a multicomponent intervention for NMIBC survivors consisting of a magazine, tracking book, live telephone call script, and interactive voice messages. Entitled POW-R Health: Power to Redefine Your Health, the intervention incorporated findings from our adaptation process to ensure saliency to NMIBC survivors. Conclusions: This is the first evidence-based, theoretically grounded dietary intervention developed to reduce bladder cancer recurrence in NMIBC survivors using a systematic process for community adaptation. This study provides a model for others who aim to develop behavioral, community-relevant interventions for cancer prevention and control with the overall goal of wide-scale implementation and dissemination.
Digital Peer Support for People With Severe Mental Illness: Key Concepts and Findings Overview
Chapter
  • Jan 2022
The literature has recognized peer support as a fundamental part of the recovery process for people with severe mental illness (SMI). These populations frequently experience barriers related to (self)stigmatization, social relationship, poor friendship quality, ostracism, isolation, and fear of being rejected or embarrassed. Scientific research suggests those individuals are more willing to share personal and sensitive details through digital technologies, building friendships and using the internet to access health information rather than their peers who do not experience SMI. The purpose of this chapter is to explore the digital-based peer programs and to analyze scientific evidence behind the alternative paradigm, related concepts, intervention designs, and results.
Unmet Needs of People with Serious Mental Illness: Perspectives from Certified Peer Specialists
Article
Full-text available
Examine the unmet needs of people with serious mental illness (SMI) from the perspective of certified peer specialists. 267 certified peer specialists from 38 states completed an online survey (female [73%], 50.9 [SD = 12] years, and non-Hispanic White [79.8%]). Many respondents reported a primary mental health diagnoses (n = 200), 22 respondents reported their diagnosis as schizophrenia spectrum disorder (11%), 46 respondents reported bipolar disorder (22.1%), 47 respondents reported major depressive disorder (22.6%), 29 respondents reported post-traumatic stress disorder (13.9%), 27 respondents reported alcohol/substance use disorder (13%), 2 respondents reported personality disorder (1%), and 12 reported “other” (5.8%). A mixed methods convergence analysis integrated quantitative with qualitative data. Social isolation (n = 160, 59.9%) and feeling lonely (n = 159, 59.6%) were the most highly endorsed unmet need, followed by the need to address chronic health conditions (n = 80, 30%), prevent mental health hospitalization (n = 71, 23.6%), and prevent drug use (n = 66, 24.7%). Four themes emerged: need to address basic necessities, loneliness and social isolation, hope, and addiction. Addressing loneliness and social isolation were identified as the primary unmet needs among people with SMI. Addressing co-morbid health conditions may simultaneously impact other unmet needs. Hope is an important intervention target. Initial insights from this study can be used to guide researchers’ efforts to incorporate certified peer specialists perspectives in developing programs to meet the needs of people with SMI. Future research using participatory research methods can further examine these initial insights.
Certified Peer Specialists and Older Adults With Serious Mental Illness' Perspectives of the Impact of a Peer-Delivered and Technology-Supported Self-Management Intervention
Article
Full-text available
  • Nov 2018
We explored the perspectives of certified peer specialists and older adults with serious mental illness on the impact of a peer-delivered medical and psychiatric self-management intervention, "PeerTECH." Transcripts from interviews with consumers with serious mental illness and a focus group with certified peer specialists who were engaged in PeerTECH were analyzed. Consumer participants (n = 8) had a mean age of 68.8 years (SD = 4.9) and included individuals diagnosed with major depressive disorder (five people), schizophrenia spectrum disorders (two people), and bipolar disorder (one person). Certified peer specialists (n = 3) were aged 55 years or more. Themes included internal and external forces of accountability, confidence, internal and external locus of hope, human bonding, and peer support. This exploratory qualitative study found that human support from peers can potentially influence health behavioral change in a combined peer and technology-based medical and psychiatric illness self-management intervention.
Smartphone Ownership, Use, and Willingness to Use Smartphones to Provide Peer-Delivered Services: Results from a National Online Survey
Article
Full-text available
Assess certified peer specialists' smartphone ownership, use, and willingness to use smartphones to provide peer-delivered services. Certified peer specialist from 38 states completed an online survey. The final sample of 267 certified peer specialists included respondents from 38 states. The majority of certified peer specialists were female (73%; n = 195) and Caucasian (79.8%; n = 213), with an average age of 50.9 (SD = 12) years, range from 21 to 77 years. More than half of the certified peer specialists (82.1%; n = 184) were currently working in peer support positions. Of those who reported their mental health diagnoses, 11% reported their diagnosis as schizophrenia spectrum disorder, 22% of respondents reported bipolar disorder, and 23% reported persistent major depressive disorder. Nearly all respondents owned a smartphone (94.8%; n = 253), and everyone indicated that smartphones and tablets could enhance the services they deliver. Certified peer specialists reported substantial ownership and use of smartphones, comparable to existing national data. They are willing to deliver smartphone interventions for mental health and physical health self-management, suggesting that smartphones may be an increasingly useful tool for offering evidence-based care. Without Medicaid mandate, certified peer specialists are naturally trying to enhance peer delivered services with technology. Peer support could act as a mechanism to promote consumer engagement in a smartphone-based intervention. Certified peer specialist own and utilize smartphones, and the majority are willing to deliver technology-based and technology-enhanced interventions using these devices to address medical and psychiatric self-management.
Feasibility, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology Supported Self-Management Intervention for Older Adults with Serious Mental Illness
Article
Full-text available
To assess the feasibility, acceptability, and preliminary effectiveness of a peer-delivered and technology supported integrated medical and psychiatric self-management intervention for older adults with serious mental illness. Ten older adults with serious mental illness (i.e., schizophrenia, schizoaffective disorder, bipolar disorder, or major depressive disorder) and medical comorbidity (i.e., cardiovascular disease, obesity, diabetes, chronic obstructive pulmonary disease, hypertension, and/or high cholesterol) aged 60 years and older received the PeerTECH intervention in their homes. Three certified peer specialists were trained to deliver PeerTECH. Data were collected at baseline, one-month, and three-month. The pilot study demonstrated that a three-month, peer-delivered and technology-supported integrated medical and psychiatric self-management intervention (“PeerTECH”) was experienced by peer specialists and participants as feasible and acceptable. PeerTECH was associated with statistically significant improvements in psychiatric self-management. In addition, pre/post, non-statistically significant improvements were observed in self-efficacy for managing chronic health conditions, hope, quality of life, medical self-management skills, and empowerment. This pre/post pilot study demonstrated it is possible to train peers to use technology to deliver an integrated psychiatric and medical self-management intervention in a home-based setting to older adults with serious mental illness with fidelity. These findings provide preliminary evidence that a peer-delivered and technology-supported intervention designed to improve medical and psychiatric self-management is feasible, acceptable, and is potentially associated with improvements in psychiatric self-management, self-efficacy for managing chronic health conditions, hope, quality of life, medical self-management skills, and empowerment with older adults with serious mental illness and chronic health conditions.
Adapting a Psychosocial Intervention for Smartphone Delivery to Middle-Aged and Older Adults with Serious Mental Illness
Article
Full-text available
  • Jan 2017
Objective: To describe the process of adapting an integrated medical and psychiatric self-management intervention to a smartphone application for middle-aged and older adults with serious mental illness using an adaptive systems engineering framework and user-centered design. Methods: First, we determined the technical abilities and needs of middle-aged and older adults with serious mental illnesses using smartphones. Then, we developed smartphone content through principles of user-centered design and modified an existing smartphone platform. Finally, we conducted a usability test using "think aloud" and verbal probing. Results: We adapted a psychosocial self-management intervention to a smartphone application and tested its usability. Ten participants (mean age: 55.3 years, SD: 6.2 years) with serious mental illness and comorbid chronic health conditions reported a high level of usability and satisfaction with the smartphone application. Conclusions: Middle-aged and older adults with serious mental illness and limited technical abilities were able to participate in a process involving user-centered design and adaptation of a self-management intervention to be delivered by a smartphone. High usability ratings suggest that middle-aged and older adults with serious mental illness have the potential to use tailored smartphone interventions. Future research is indicated to establish effectiveness and to determine the type and intensity of clinical support needed to successfully implement smartphone applications as a component of community-based services for older adults with psychiatric and medical conditions.
Systematic Review of Integrated General Medical and Psychiatric Self-Management Interventions for Adults With Serious Mental Illness
Article
Full-text available
  • Jun 2016
Objective: Adults with serious mental illness are disproportionately affected by general medical comorbidity, earlier onset of disease, and premature mortality. Integrated self-management interventions have been developed to address both general medical and psychiatric illnesses. This systematic review examined evidence about the effect of self-management interventions that target both general medical and psychiatric illnesses and evaluated the potential for implementation. Methods: Databases, including CINAHL, Cochrane Central, Ovid MEDLINE, PsycINFO, and Web of Science, were searched for articles published between 1946 and July 2015. Studies evaluating integrated general medical and psychiatric self-management interventions for adults with schizophrenia spectrum or mood disorders and general medical comorbidity were included. Results: Fifteen studies (nine randomized controlled trials and six pre-post designs) reported on nine interventions: automated telehealth, Health and Recovery Peer program, Helping Older People Experience Success, Integrated Illness Management and Recovery, Life Goals Collaborative Care, Living Well, Norlunga Chronic Disease Self-Management program, Paxton House, and Targeted Training in Illness Management. Most studies demonstrated feasibility, acceptability, and preliminary effectiveness; however, clinical effectiveness could not be established in most studies because of methodological limitations. Factors identified that may deter implementation included operating costs, impractical length, and workforce requirements. Conclusions: Integrated general medical and psychiatric illness self-management interventions appear feasible and acceptable, with high potential for clinical effectiveness. However, implementation factors were rarely considered in intervention development, which may contribute to limited uptake and reach in real-world settings.
Mortality in Mental Disorders and Global Disease Burden Implications: A Systematic Review and Meta-Analysis
Article
Full-text available
  • Feb 2015
Despite the potential importance of understanding excess mortality among people with mental disorders, no comprehensive meta-analyses have been conducted quantifying mortality across mental disorders. To conduct a systematic review and meta-analysis of mortality among people with mental disorders and examine differences in mortality risks by type of death, diagnosis, and study characteristics. We searched EMBASE, MEDLINE, PsychINFO, and Web of Science from inception through May 7, 2014, including references of eligible articles. Our search strategy included terms for mental disorders (eg, mental disorders, serious mental illness, and severe mental illness), specific diagnoses (eg, schizophrenia, depression, anxiety, and bipolar disorder), and mortality. We also used Google Scholar to identify articles that cited eligible articles. English-language cohort studies that reported a mortality estimate of mental disorders compared with a general population or controls from the same study setting without mental illness were included. Two reviewers independently reviewed the titles, abstracts, and articles. Of 2481 studies identified, 203 articles met the eligibility criteria and represented 29 countries in 6 continents. One reviewer conducted a full abstraction of all data, and 2 reviewers verified accuracy. Mortality estimates (eg, standardized mortality ratios, relative risks, hazard ratios, odds ratios, and years of potential life lost) comparing people with mental disorders and the general population or people without mental disorders. We used random-effects meta-analysis models to pool mortality ratios for all, natural, and unnatural causes of death. We also examined years of potential life lost and estimated the population attributable risk of mortality due to mental disorders. For all-cause mortality, the pooled relative risk of mortality among those with mental disorders (from 148 studies) was 2.22 (95% CI, 2.12-2.33). Of these, 135 studies revealed that mortality was significantly higher among people with mental disorders than among the comparison population. A total of 67.3% of deaths among people with mental disorders were due to natural causes, 17.5% to unnatural causes, and the remainder to other or unknown causes. The median years of potential life lost was 10 years (n = 24 studies). We estimate that 14.3% of deaths worldwide, or approximately 8 million deaths each year, are attributable to mental disorders. These estimates suggest that mental disorders rank among the most substantial causes of death worldwide. Efforts to quantify and address the global burden of illness need to better consider the role of mental disorders in preventable mortality.
Nothing About Us Without Us: Disability Oppression and Empowerment
Book
  • Mar 1998
Peer-based health interventions for people with serious mental illness: A systematic literature review
Article
Health interventions delivered by peer specialists or co-facilitated by peer specialists and health professionals can help improve the physical health of people with serious mental illness (SMI). Yet, the quality of the studies examining these health interventions and their impact on health outcomes remains unclear. To address this gap, we conducted a systematic literature review of peer-based health interventions for people with SMI. We rated the methodological quality of studies, summarized intervention strategies and health outcomes, and evaluated the inclusion of racial and ethnic minorities in these studies. We used the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines to conduct our systematic literature review. Electronic bibliographic databases and manual searches were used to locate articles that were published in English in peer-reviewed journals between 1990 and 2015, described peer-based health interventions for people with SMI, and evaluated the impact of the interventions on physical health outcomes. Two independent reviewers used a standardized instrument to rate studies? methodological quality, abstracted study characteristics, and evaluated the effects of the interventions on different health outcomes. Eighteen articles were reviewed. Findings indicated that the strength of the evidence generated from these studies is limited due to several methodological limitations. Mixed and limited intervention effects were reported for most health outcomes. The most promising interventions were self-management and peer-navigator interventions. Efforts to strengthen the evidence of peer-based interventions require a research agenda that focuses on establishing the efficacy and effectiveness of these interventions across different populations and settings.
Pedagogy of The Oppressed
Book
  • Jan 2007