Published by Oxford University Press on behalf of the International Epidemiological Association International Journal of Epidemiology 2014;43:354–364

ß The Author 2013; all rights reserved. Advance Access publication 4 December 2013 doi:10.1093/ije/dyt224

Measuring social inclusion—a key outcome in

global mental health
Joy Noel Baumgartner1* and Jonathan K Burns2
1
Social & Behavioral Health Sciences, FHI 360, DC, USA, 2Department of Psychiatry, University of KwaZulu-Natal, Durban, South Africa
*Corresponding author. Social & Behavioral Health Sciences, FHI 360, DC, USA. Email: jbaumgartner@fhi360.org

Accepted 1 October 2013

Background Social inclusion is increasingly recognized as a key outcome for
evaluating global mental health programmes and interventions.
Whereas social inclusion as an outcome is not a new concept in
the field of mental health, its measurement has been hampered by
varying definitions, concepts and instruments. To move the field
forward, this paper reviews the currently available instruments-
which measure social inclusion and are reported in the literature,
realizing that no single measure will be appropriate for all studies
or contexts.
Methods A systematic literature search of English language peer-reviewed
articles published through February 2013 was undertaken to iden-
tify scales specifically developed to measure social inclusion or
social/community integration among populations with mental
disorders.
Results Five instruments were identified through the search criteria. The
scales are discussed in terms of their theoretical underpinnings,
domains and/or key items and their potential for use in global
settings. Whereas numerous reviewed abstracts discussed mental
health and social inclusion or social integration, very few were con-
cerned with direct measurement of the construct. All identified
scales were developed in high-income countries with limited atten-
tion paid to how the scale could be adapted for cross-cultural use.
Conclusions Social inclusion is increasingly highlighted as a key outcome for
global mental health policies and programmes, yet its measurement
is underdeveloped. There is need for a global cross-cultural measure
that has been developed and tested in diverse settings. However,
until that need is met, some of the scales presented here may be
amenable to adaptation.
Keywords Social inclusion, social integration, mental health, cross-cultural,
measurement

Introduction policies and a consumer-influenced recovery perspec-

Social inclusion is increasingly highlighted as a key
outcome for individuals living with mental disorders,
in the field of global mental health.1–5 Social inclusion
is not a new concept in the field of mental health, but
there is a renewed focus on it due to recent global
tive in mental health services.4–7 It is important to
reflect that many of the key concepts related to
social inclusion have their origins in the psychiatric
and developmental disabilities rehabilitation field
with the work on goal attainment, role attainment

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and social role functioning.8,9 Such concepts have
been the crux of measurement in the field for dec-
ades. It seems however that some of this history may
have been overlooked and that obfuscation has
occurred within the ‘global mental health’ (GMH)
discourse as new, overlapping and sometimes confus-
ing terms emerged. It appears that under the um-
brella of GMH, the measurement of social inclusion
at an individual level for mental health service users
has been hampered by varying definitions, concepts
and measurement strategies.10–12 Moreover, there is
limited evidence that recent GMH models of mental
health services and psychosocial interventions are
even oriented towards supporting social inclusion for
individuals with mental disorders.13 To help prioritize
the social inclusion of those living with mental ill-
nesses and to move the measurement of this concept
forward, it is important to understand how social in-
clusion is currently being measured at the individual
level in the field of global mental health.
Policies and Programmatic Guidance on
Social Inclusion
Contemporary global policy guidance on social inclu-
sion for persons with mental disorders is sweeping and
not focused on the details of measurement. In 2006,
the United Nations adopted the Convention on the
Rights of Persons with Disabilities (CRPD) whose pur-
pose is to ‘promote, protect and ensure the full and
equal enjoyment of all human rights and fundamental
freedoms by all persons with disabilities, and to pro-
mote respect for their inherent dignity.’4 A general
principle of this document stipulates that persons
with disabilities, including those with mental dis-
orders, have ‘a right to full and effective participation
and inclusion in society’.4 What constitutes ‘full and
effective participation and inclusion’ is not operationa-
lized and is therefore open to interpretation.
Meanwhile, the World Health Organization (WHO)
offers broad programmatic guidance for countries to
promote social integration for people with mental ill-
ness. A primary purpose of the Mental Health Policy
and Service Guidance Package is to ‘assist the reinte-
gration of people with mental disorders into all as-
pects of community life, thus improving their overall
quality of life’.5 A related WHO document on mental
health promotion states that ‘social inclusion for an
individual means access to supportive relationships,
involvement in group activities and civic engage-
ment.’14 WHO’s recent mhGAP Intervention Guide in-
cludes psychosocial interventions to facilitate
rehabilitation in the community including increasing
inclusion in social activities.15 Similarly, at a national
level, there are numerous examples of country-specific
policies and programmatic guidelines that aim to sup-
port and strengthen social inclusion for individuals
living with mental disorders, but there is very little
supplementary guidance on how to operationalize,
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SOCIAL INCLUSION IN GLOBAL MENTAL HEALTH 355
much less measure, social inclusion for affected indi-
viduals.16–18
From a research perspective, social inclusion is also
a stated global priority as an outcome measure. The
Grand Challenges in Global Mental Health initiative
recently identified the top 40 challenges in the next
10 years that will make an impact on the lives of
people living with mental and neurological disorders.1
The second most highly ranked challenge is to
‘develop culturally informed methods to eliminate
the stigma, discrimination and social exclusion of pa-
tients and families across cultural settings’. We
cannot hope to eliminate social exclusion, or rather,
promote social inclusion through interventions with-
out more efforts to conceptualize, measure and moni-
tor this important goal.
Concepts of social inclusion and social
integration
A variety of terms, including ‘social inclusion’ and
‘social integration’, are used interchangeably in both
research and policy documents, and we argue that
this reflects the underlying confusion that surrounds
this concept within the GMH discourse. Any renewed
attempts to develop meaningful measures of social
inclusion, as part of the GMH agenda, must begin
with clarification of the concept itself.
The mixed origins of these terms are informative in
understanding their context and individual meanings.
‘Social integration’ was used by French sociologist
Emile Durkheim in his work to understand the rela-
tionship between society, social cohesion and
health,19 and the concept also arose in relation to
the US civil rights movement and later in relation to
the movement of minority ethnic groups into ‘main-
stream’ societies of Europe and other high-income re-
gions. Meanwhile, the United Nations established a
Social Integration Branch in the Department of
Economic and Social Affairs, focused on issues of
social integration and social inclusion and producing
numerous publications on the topic.20
‘Social inclusion’ (and its converse, ‘social exclu-
sion’) emerged into common usage in the UK and
Europe more broadly in relation to the establishment
of unitary policies for the European Union. In the
early 2000s, heads of states and governments adopted
the European Social Policy Agenda which included
comparable ways to combat poverty and promote
social inclusion. Populations regarded as particularly
at risk of social exclusion included: disabled people,
refugees and asylum seekers, ethnic minorities, older
people, single parent families, women, unemployed
people and specifically people with mental health
problems. In conceptualizing the core meaning of
‘social inclusion’, the following statement of a partici-
pant in a project aimed at furthering EU policy is
helpful: ‘Social inclusion must come down to some-
where to live, something to do, someone to love. It’s
as simple—and as complicated—as that’.21
 356 INTERNATIONAL JOURNAL OF EPIDEMIOLOGY
There have been a number of recent reviews of
social inclusion and social integration, as they relate
to mental health programmes and research. These re-
views help illuminate the myriad of issues concerning
overlapping concepts, lack of consensus on definitions
and insufficient theoretical underpinnings that com-
plicate the ability to evaluate social inclusion at an
individual level.10–12,22–24 For example, Ware and col-
leagues have critiqued previous efforts in psychiatry to
conceptualize social integration, arguing that they
‘have incompletely captured its social dimensions, in-
stead overemphasizing location and functioning as in-
dicators’.25 These authors refer to vigorous debates
outside psychiatry, regarding the social dimensions
of disability, with historically contrasted positions
occupied by ‘social role valorization’ theory on the
one hand and the social model of disability on the
other. Social role valorization identifies ways in
which people with disabilities have been devalued
by society, and advocates in response greater access
to valued social roles—thus locating disability in the
individual. In contrast, the social model of disability
locates disability in society and the barriers created by
‘disabling social structures, policies and practices’. In
their effort to redefine ‘social integration’, Ware and
colleagues draw on Amartya Sen’s Capabilities
Approach which has been influential in global
human development work. The Capabilities
Approach concerns not just a person’s functioning
(activities, achievements), but also his/her free-
doms—whether the person has the opportunities
and the environment necessary to function as he/she
wishes.26,27 This reflects an attempt to bring the his-
torically contrasted positions of social role valorization
theory and the social model of disability together in a
comprehensive definition of social integration that is
based upon ‘a process, unfolding over time, through
which individuals who have been psychiatrically dis-
abled increasingly develop and exercise their capaci-
ties for connectedness and citizenship’.25
Close to this definition is work by Huxley and col-
leagues who offer a particularly comprehensive review
and highlight that there are two broad schools of
thought regarding social inclusion and mental
health.12 First, a rights-based approach focuses on
social exclusion and the deprivation of rights as a
member or citizen of a particular community or society.
The second is a focus on social inclusion as the oppor-
tunity to participate in key activities of the society in
question. The key to both approaches appears to be that
social inclusion is more than just participation, it is also
the opportunity and ability to participate as one wishes.
The literature on social inclusion and it measurement
is complex, and further complicated by the fact that
other concepts such as disability and quality of life
already capture some of the relevant elements of
social inclusion. However, as the field of global
mental health gains momentum and evidence-based
psychosocial interventions from high-income countries
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are adapted for diverse cultural contexts, social inclu-
sion is increasingly likely to be an outcome of interest,
creating a pressing need to identify (or develop) an
appropriate instrument for its measurement.
Aims of the study
In order to move the field forward, this paper presents
a systematic review of the currently available instru-
ments that have a stated focus on measuring social
inclusion or social integration among adults with
mental disorders. For each measure, we describe its
theoretical basis (if any), conceptual domains/key
items, psychometric properties, strengths and limita-
tions, with an eye toward cross-cultural applicability,
realizing that no single measure will be appropriate
for all studies or contexts. Due to the nature of the
overlapping concepts and potential use of proxy meas-
ures for social inclusion (e.g. Quality of Life), we also
informally list the other types of measures that stu-
dies have used for measuring social inclusion. Finally,
we comment on which measures we consider most
meaningful, particularly for use cross-culturally, with
discussion of future directions for research.
Methods
A literature search was undertaken to identify scales
that measure social inclusion or social integration
among individuals with diagnosed mental health
problems in English language peer-reviewed journal
articles published through February 2013. Mental
health problems did not include traumatic brain inju-
ries or developmental/intellectual disabilities. To be
included in the review, the scales had to have a
stated focus on ‘social inclusion’, ‘social integration’
or ‘community integration’ by the original authors
and they needed some minimal psychometric testing
(i.e. at least some reliability or validity testing). We
selected these three specific terms for a global review
of measures because, whereas ‘social inclusion’ is a
widely used concept in Europe for populations with
mental disorders, in the USA the terms ‘social inte-
gration’ and ‘community integration’ are more com-
monly used.10,11,25,28 Although not ideal, most of the
mental health-related psychosocial scales in the litera-
ture originate in high-income countries and are then
adapted for low- and middle-income country
(LAMIC) contexts; hence the inclusive focus on ter-
minology used in Europe and the USA.
The following databases were searched: PubMed,
PsycInfo, PsycArticle, Health and Psychosocial
Instruments, Mental Measurements Yearbook with Tests
in Print, CINAHL, Web of Science, African Journals Online
and SA ePublications. The search strategy for PubMed was
[social inclusion(tiab) OR social exclusion(tiab) OR social
integration(tiab) OR community integration(tiab)] AND
[psychometrics(Mesh) OR measur* OR scale* OR index
OR instrument* OR test OR tests OR testing OR tool*]

AND [‘mental health’ OR mental disorders(Mesh)]. The
other databases were searched similarly, sometimes further
limited by major subject headings depending on the data-
base. For all abstracts that discussed social inclusion or
social/community integration among a population with
mental disorders, full articles were pulled and reviewed
to assess the measures used. In addition to abstracts iden-
tified through the database searches, we reviewed the ref-
erence lists of selected papers for relevant articles. For
example, review articles on the concept of social inclusion
or community integration were scrutinized to find new
potential references. For each of these, the abstract and
if necessary the full paper were read to determine whether
another previously unidentified measure existed.
Results
Over 1200 abstracts were reviewed using the outlined
search strategy and five instruments met the inclusion
criteria. Although numerous reviewed abstracts dis-
cussed mental health and social inclusion/integration,
very few were concerned with direct measurement of
the construct. Many articles discussed the general
social inclusion implications of a particular study
(e.g. a mental health intervention) in the conclusion,
but few studies actually directly measured social in-
clusion. All of the identified instruments were de-
veloped in high-income countries and all but one
were developed specifically to measure social inclu-
sion or social/community integration among people
with mental health problems. The exception was ori-
ginally developed for a population with traumatic
brain injuries, but the scale was later used in a
study with individuals with severe mental illnesses
and is therefore included in this review.29,30
Table 1 lists the reviewed scales and includes infor-
mation on domains covered, theoretical framework or
definition used for the concept measured, psychomet-
ric testing applied and illustrative studies that have
used the scale.
Social Inclusion Questionnaire User
Experience (SInQUE)
The first instrument, the Social Inclusion
Questionnaire User Experience (SInQUE) by Mezey
and colleagues was designed to measure the level of
social inclusion among those with severe mental ill-
ness, including their desire for inclusion and changes
in social inclusion since their first psychiatric hospital
admission.31 The 75 scale items are largely based on
domains described in the Poverty and Social
Exclusion Survey (PSE)32 which assessed the extent
and consequences of factors impacting on poverty,
deprivation and social exclusion in the general popu-
lation in the UK. The SInQue is in two parts: the
first relates to the year prior to first psychiatric ad-
mission; and the second relates to the current situ-
ation. Domains include productivity, consumption,
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SOCIAL INCLUSION IN GLOBAL MENTAL HEALTH 357
access to services, political engagement and social
integration.
The SInQUE is comprehensive in that it measures
both objective and subjective aspects of inclusion
and it captures reasons for non-participation. If indi-
viduals state that they do not participate in a specific
activity, they are then shown a card with a selection
of reasons for non-participation. Scores are assigned
in order not to penalize users who do not want to
participate in some activities. It is a particular
strength of this scale that this type of weighting
allows the scale to reflect individual-level values
which could be helpful for future cross-cultural use,
given that the scale was developed for a UK popula-
tion. Construct and concurrent validity with measures
of unmet need and quality of life were established
with a population living with schizophrenia spectrum
disorders in the original development of the scale;
however, the domain of political engagement was
highly positively skewed at both time points and
may need to be revisited.31 A subsequent analysis
with the same study population described the social
inclusion of participants pre/post onset of illness and
found that the domains of social integration and
productivity changed significantly over time.33 As a
new instrument, significant reliability and validity
testing is required among diverse samples. In add-
ition, it is not clear how this instrument would
work for programme evaluation and measuring
changes over time (pre/post intervention vs current
focus on pre/post illness onset).
Social and Community Opportunities
Profile (SCOPE)
The next scale, the Social and Community
Opportunities Profile (SCOPE) by Huxley and col-
leagues,12 has undergone more rigorous psychometric
testing, but again, this is a fairly new instrument de-
veloped in the UK, so additional reliability and valid-
ity testing with different populations is warranted.
The 42-item short version of this scale includes two
subjective scales—perceived opportunities and satis-
faction with opportunities—as well as objective op-
portunity and participation items. Domains covered
include leisure time, housing, work, finances, safety,
education, health, and family and friends. There is
also a 121-item long version which includes a subject-
ive well-being scale that is similar to quality of life
questions, but the long version proved less acceptable
to test participants than the shorter version.
The SCOPE scale was developed using concept map-
ping for a model of social inclusion with objective and
subjective factors, showing how opportunities and
choices relate to material domains. These factors,
along with personal feelings about inclusion, result
in participation and engagement. The scale has good
construct validity as measured by associations with
participation and social capital measures. However,
the authors highlight that the most important
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358

Table 1 Measures of social inclusion or social/community integration among populations with mental disorders

Theoretical framework or Psychometric testing in Illustrative studies that

Scale/Author(s) Domains or key items concept definition for scale original article used the scale
Social Inclusion 75 items Based on Poverty and Social Good concurrent and Killaspy et al., 2013.28
Questionnaire Domains: Exclusion Survey (PSE)27 discriminant validity; Country: UK.
User which assessed the extent and convergent validity Study population: adults
Experience — productivity (6 items) consequences of factors im- established for two with psychosis.
(SInQUE) — consumption (15 items) pacting on poverty, depriv- domains: social integra- Study design: cross-
Mezey et al., 2012 — access to services (6 items) ation and social exclusion in tion and productivity sectional.
— political engagement (6 items) the general population in the Data from original scale
— social integration (42 items) UK development
Scale is in two parts: first relates to the year population26
prior to their first psychiatric admission;
and second relates to their current
situation

Social and 48 items (short version) Concept mapping to develop Good discriminant validity No other published studies
Community Domains: model of social inclusion with (between 3 known

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Opportunities objective and subjective fac- mental health status
INTERNATIONAL JOURNAL OF EPIDEMIOLOGY

Profile — leisure and participation tors, showing how opportu- groups); good construct
(SCOPE) — housing and accommodation nities and choices relate to validity (compared
Huxley et al., 2012 — safety material domains. These fac- against social capital
— work tors, along with personal feel- and participation) and
— financial situation ings about inclusion, result in reasonable internal con-
— self-reported health participation and engagement sistency (0.60 to 0.75)
— education
— family and social relationships
— overall inclusion
Each domain includes objective and subject-
ive items relating to availability of, per-
sonal access to and participation in various
activities.

Social Inclusion 22 items Concept and question develop- Good internal consistency Margrove et al., 2013.53
Scale (SIS) Domains: ment was wide ranging based (alpha .85) but test- Country: UK.
Secker et al., 2009 on various literature reviews retest reliability and Study population: adults
— building social capital construct validity not with mental health
— social acceptance established problems.
— neighbourhood cohesion Study design: waiting-list
— security of housing tenure controlled programme
— engagement in leisure/cultural activities evaluation
— citizenship
(continued)
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Table 1 Continued

Theoretical framework or Psychometric testing in Illustrative studies that

Scale/Author(s) Domains or key items concept definition for scale original article used the scale
Social Integration 62 items (includes demographic, social Content developed and revised Subscales showed No other published studies
Survey (SIS) activities and work sections) based on medical literature, adequate internal con-
Kawata and Domains: expert recommendations and sistency and test–retest
Revicki, 2008 patient and informant reliability except work
— social perception feedback. Instruments were interactions, which was
— work interactions modified based on not applicable for most
— social skills recommendations from clinical patients; inter-rater reli-
— social cognition experts in the area of ability (between patients
— instrumental activities of daily living/

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schizophrenia and informants) was
self-care low; construct and dis-
criminant validity ana-
lyses show only minimal
relationship with clinical
instruments

Community 10 items Previous qualitative research Good internal consistency Lloyd et al., 2010.
Integration Domains: with population with brain (alpha .87); content Country: Australia.
Measure (CIM) injuries54 validity assured by Study population: adults
McColl et al., 2001 — belonging (includes living situation, qualitative development with mental illness.
feeling accepted and part of the of the of scale and discrimin- Study design: cross-
community, feeling close to people in ant validity supported by sectional, descriptive
community) the CIM’s ability to
— independent participation (includes differentiate between
having something to do during the main subsamples. Criterion
part of the day that is useful and pro- and construct validity
ductive, leisure activities, knowing the supported by correl-
community and its rules) ations with relevant
instruments
SOCIAL INCLUSION IN GLOBAL MENTAL HEALTH
359
 360 INTERNATIONAL JOURNAL OF EPIDEMIOLOGY
challenge that remains for the instrument is whether
the SCOPE is responsive to changes in social inclusion
over time. Research is under way but published
results are pending.
Social Inclusion Scale (SIS)
The Social Inclusion Scale (SIS) by Secker and col-
leagues34 was developed to assess the impact of arts
participation on social inclusion among adults in the
UK with mental health problems, although the items
are appropriate for a wider population with mental
illnesses. For this reason, and because the SIS raises
a number of key theoretical issues regarding the
measurement of social inclusion, we include this in-
strument and interrogate it in some detail. The 22-
item scale comprises the following domains: building
social capital; social acceptance; neighborhood cohe-
sion; security of housing tenure; engagement in leis-
ure and cultural activities; and citizenship. The final
scale contains three subscales: social isolation; social
relations; and social acceptance, whereas social and
occupational activities, which are also regarded as in-
dicators of social inclusion, are measured by separate
questions. Domain and question development was
wide ranging and based on various literature reviews
with no particular theoretical basis. The scale was
found to correlate with other measures of empower-
ment and clinical outcomes.
In our view, the SIS has a number of limitations
that need to be addressed before considering its use
in a global context. The first is the fact that it was
developed for use with a specific population of arts
project participants, the majority of whom were
women, in their middle years, from White ethnic
backgrounds and experiencing depression (not psych-
osis as in other scales). Thus its applicability and rele-
vance in other populations and contexts are
unknown. Second, many items in the SIS are very
context-specific in that they may be relevant to a
high-income-country population, but this does not
imply that they are relevant or applicable in other
cultural settings. For example, there are two items
relating to social relations: ‘have learnt something
about other people’s cultures’ and ‘I have been to
new places’. In some Western developed cultures
many people (but not all) value the enriching and
broadening experience of learning about other cul-
tures and travelling to new places. But this is not
necessarily important or valued in other contexts
and one cannot assume that these activities are ne-
cessarily measures of social integration in all societies.
Likewise, another item ‘I have helped out at a charity
or local group’ is again very specific to social and cul-
tural contexts and is too specific to be useful in a
measure that has wide global validity. A broader
and less specific phrase, such as ‘I have helped out/
volunteered in my community’ would improve the
usefulness of this item.
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In two further items on social relations, the SIS spe-
cifically excludes social involvement with other
mental health consumers, implying that this form of
social engagement ‘does not count’. Our view on this
is as follows: why should one’s social life not consist
of engagement with other mental health consumersif
this engagement is satisfying and gives a sense of
acceptance and belonging? Although we understand
that the intent is that those with mental illness
should not be socially restricted to so-called non-nor-
mative relationships and contexts, we and others be-
lieve consumers should make the choice for
themselves.35,36
Finally, several items in the SIS relate to participa-
tion in activities (such as sporting and cultural activ-
ities.) Again, although we understand the intent of
the instrument is to assess participation in life-enhan-
cing activities, we believe that simply measuring
whether a person participates or not is the wrong ap-
proach and misses the point. The issue is that physical
participation in any kind of activity is a personal
choice. Some people like to be involved and others
do not or are not interested. Thus the issue in ques-
tion is actually: if you choose to participate in an ac-
tivity, are you able to participate? We will return to
the question of participation later in this paper. The
SIS has a number of items that relate to social accept-
ance; and in our view, this is a strength of the instru-
ment—since acceptance is a core aspect of social
inclusion and integration, irrespective of culture and
context.
Social Integration Survey (SIS)
The Social Integration Survey (SIS) by Kawata and
Revicki is another recently developed scale that has
not been used in any other published studies besides
the original scale development.37 This 62-item scale
was developed based on the medical literature,
expert recommendations and patient and informant
feedback. The instrument was modified based on rec-
ommendations from clinical experts in the area of
schizophrenia and it was designed to measure the fol-
lowing social functioning activities or behaviours by
participants in the past 4 weeks: social and emotional
interactions; work interactions; social skills; social
activities; and instrumental activities of daily living
(IADL)/self-care. These domains, as stated by the au-
thors, are typical of other social functioning scales
and in fact, the authors use the terms social integra-
tion and social functioning interchangeably while dis-
cussing the scale.
In our view, apart from the domain items on social
activities and some of the items on work interactions
(these items relate to social engagement and partici-
pation), this instrument is more a measure of social
functioning. It taps into questions of ability to have
independent function and into social cognitive func-
tional abilities. Although important, the ability to
function within social contexts is not the same as

being socially integrated and included. Thus this in-
strument has very limited usefulness as a measure of
social integration.
Community Integration Measure (CIM)
The last scale we include is the Community
Integration Measure (CIM) by McColl and collea-
gues.29 As mentioned previously, although this scale
was originally developed for those with traumatic
brain injuries, the scale was subsequently used
among populations with mental health problems.30,38
This 10-item scale has two domains: belonging (in-
cludes living situation, feeling accepted and part of
the community, feeling close to people in the commu-
nity); and independent participation (includes having
something to do during the main part of the day that
is useful and productive, leisure activities, knowing
the community and its rules). Strengths of the instru-
ment include its brevity (if reducing participant
burden is an issue); the fact that items are quite gen-
eral and therefore potentially applicable in other cul-
tural contexts; and the fact that it includes both
subjective and objective elements of integration.
Notably, a particular strength of the CIM is its partial
focus on the individual’s sense of belonging and ac-
ceptance within his or her community. This, we be-
lieve, is a core component of social integration—see
further discussion on this point below. In terms of
limitations, as the authors themselves point out, as-
pects of their conceptual model may be outdated. The
CIM is based on older ideas about disability and
handicap and not the current ICF framework that
focuses on activity and participation which they in-
timate is more relevant now.39 Nevertheless, although
the style of the CIM may be dated, its focus on be-
longing and participation—key aspects of social inte-
gration in our view—means it has relevance and value
with respect to identifying the core components of
social integration.
Related concepts
Although there were only a few identified scales that
explicitly measured social inclusion or social integra-
tion, many more mental health studies used related
concepts with specific associated scales as a strategy
for measuring social inclusion or social integration
among populations with mental disorders. This
review would be incomplete without a brief mention
of these related concepts. The related concepts and
some examples of the associated scales included:
quality of life;40 disability;41 social networks and
social support;42 social capital; social relationships;43
stigma; social functioning;44 activities of daily living;
and participation.45 As can be seen from our review
of the five identified instruments above, many of
these related concepts feature within these instru-
ments. Where authors of the instruments explicitly
set out to develop measures of social inclusion and
integration, very often we believe they missed the
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SOCIAL INCLUSION IN GLOBAL MENTAL HEALTH 361
core issues (in part or in full); instead becoming
side-tracked into a focus on these related, but not
core, concepts.
We should also mention briefly that a number of
studies assessed social inclusion or social integration
by using various ad hoc questions whereas others cre-
ated composite measures, pulling from various scales,
often informed by an overarching framework such as
the community integration model by Wong and
Solomon that urges researchers to consider physical,
social and psychological integration as components of
community integration.28,46–50
Discussion
Numerous studies have a stated interest in the social
inclusion of persons with mental disorders. However,
most studies either do not even attempt to measure
social inclusion or they extrapolate on evidence from
a similar domain, such as quality of life, to make
conclusions about the social inclusion implications
for affected individuals. This paper highlights what
instruments are available within the mental health
literature. Strikingly, our review has shown that in
fact there is very little work in this field and, in our
view, no single instrument currently available meas-
ures the core components of social inclusion and in-
tegration in a manner that is globally accessible and
relevant. The instrument that perhaps comes closest
to this objective is the SCOPE since it incorporates
both subjective and objective items relating to
choice, opportunity and participation—all of which
we believe are important. Whereas no existing scale
of social inclusion or integration is (or could be) per-
fect, there are various strategies for instrument
adaptation.23
We should also note that there are other social in-
clusion and community integration scales in the dis-
ability literature, particularly for those with acquired
brain injuries and developmental disabilities, that are
not reviewed here due to our search inclusion cri-
teria.51 However, future efforts to develop a true
social inclusion and integration instrument should in-
clude a review of some of these related scales since
they are likely to contain useful concepts and items
that could be ‘borrowed’ and adapted to the mental
health context.
Defining the key components of social
inclusion
What is clear in the mental health literature reviewed
is that there is a confusing use of multiple terms and
concepts which possibly reflects a lack of clarity in the
field. The reviewed scales reveal a variety of
approaches, some overlapping, but often differing in
emphasis. As Ware and colleagues concluded, there
tends to be a focus on location and function. In for-
mulating their definition of social integration they
 362 INTERNATIONAL JOURNAL OF EPIDEMIOLOGY
identify several key attributes: that the objective of
treatment should be growth and development rather
than stabilization, so that ‘flourishing, not simply
functioning, is the envisioned outcome’; that persons
with psychiatric disabilities should be cast as agents
rather than as ‘consumers’; and that recovery from
mental illness includes recovery from social exclu-
sion—hence the social character of the recovery pro-
cess is acknowledged.25
Although this review has not identified the ‘perfect’
instrument with which we can measure social inclu-
sion, we believe it has helped to highlight several core
components that should form the basis for the devel-
opment of a more relevant and cross-culturally applic-
able tool. Importantly, it has also highlighted the fact
that these core components have been talked about
for decades in fields allied to mental health, including
the psychosocial rehabilitation and disability move-
ments. We would argue that more recent attempts
to conceptualize and measure social inclusion—
under the banner of global mental health—have mud-
died the waters and partially obscured a number of
simple truths about what comprises the social inclu-
sion of marginalized and stigmatized persons. First, it
seems that a key issue is that of belonging and ac-
ceptance. Being included and integrated within the
community and society means that the individual
feels and experiences a sense of belonging to, identi-
fication with and acceptance by that community and
society. Other researchers have termed this psycho-
logical integration, and there is a scale specifically
on sense of community that has been widely
used.28,52
Second, participation is a core component of inclu-
sion and integration, but the emphasis needs to be
not just on simple participation vs non-participation,
but rather on the individual’s sense of agency to
choose to participate if he or she so wishes to do so.
As Ware and colleagues propose, the work of Amartya
Sen is extremely useful here. Sen’s Capabilities
Approach concerns not just a person’s functioning,
but also his/her freedoms—whether one has the
opportunities and the environment necessary to func-
tion as one wishes.26,27 Regardless of social, economic
and cultural context, a capabilities approach speaks to
the individual’s sense of agency and right to choose to
participate if he/she wishes to. Thus, what matters
here is whether the opportunities exist for a person
to choose to participate according to his/her wishes.
This is relevant and speaks to the question of social
inclusion. Whether one chooses to participate or not is
actually irrelevant. One may have the opportunity to
participate but choose not to—this person could be
considered ‘included’. On the other hand, one may
wish to participate and not be able to because of vari-
ous barriers (e.g. the opportunity does not exist at all;
access is difficult due to structural factors such as
financial considerations; or one is denied or
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discouraged from participating because of one’s
mental disorder and stigma).
Thus, if we want to measure participation as a
marker/indicator of social inclusion, we need to ask
about the individual’s capability and sense of agency
and ability to participate in activities if s/he so
chooses. The kinds of questions we might then ask
could include the following. Do opportunities exist in
your daily life for you to participate in social, cultural,
recreational activities if you would wish to? If you
wish to participate in activities, are there any barriers
that stop you from participating or make it difficult
for you participate? And what would help you to over-
come these barriers and be able to participate?
Recommendations for an instrument to
measure social inclusion
In summary, we recommend that the core content of
an instrument on social inclusion should comprise the
following concepts:
 Sense of belonging in one’s community and social
acceptance
 Level of participation in community and civic life
 Sense of agency and capacity to choose whether to
participate
 Opportunities for and barriers to participation.
In addition, such an instrument should have the fol-
lowing characteristics:
 It should be based on theory or a framework
 It should be validated in individuals with a range
of mental disorders
 It should be sensitive to changes over the course of
the illness, its treatment and the ongoing process
of recovery
 It should comprise both subjective and objective
measures
 It should reflect the values of affected persons
 It should be relevant to the person and the context/
environment
 It should provide a global standard or be adaptable
for cross-cultural use.
Limitations
There are some limitations to our analysis that should
be considered. The first is the fact that only English-
language articles were included in the literature
search and it is possible that this may have excluded
articles describing scales emanating from low- and
middle-income countries (LAMICs) where languages
other than English are often dominant. We do not
believe the risk of this is too great, as authors from
LAMICs frequently publish their papers in English-
language journals so our search strategy would not
have excluded such contributions. In addition, our
exclusion of literature relating to traumatic brain inju-
ries and developmental/intellectual disabilities un-
doubtedly narrowed our access to the plethora of
 SOCIAL INCLUSION IN GLOBAL MENTAL HEALTH 363

terms and concepts encapsulating elements of social
inclusion in those fields. We have however made ref-
erence to some of the key concepts on social inclusion
that emerged over many years from the wider disabil-
ity and rehabilitation movements. Similarly, our use
of selected search terms (and not all conceivable vari-
ations thereof) will have limited this review. However,
our stated aim was to review scales specifically from
the mental health literature as it pertains to our focus
on global mental health and its priorities.
Conclusion
Promoting the social inclusion of individuals with
mental illnesses is a high priority in global mental
health. Monitoring and evaluating mental health ser-
vices for their contribution towards supporting per-
sons in their social inclusion is an important gap in
the field of global mental health. Whereas improve-
ments in social inclusion likely entail changes at the
individual, family, community and larger societal
levels, measuring social inclusion at the individual
level will help mental health programmes assess the
needs of their clients and act accordingly. There is a
need for a global cross-cultural measure of social in-
clusion that is developed and tested in diverse set-
tings; however, until that time, some of the scales
presented here may be amenable to adaptation. The
development of a new or adapted social inclusion
measure would facilitate the strengthening of com-
munity mental health services and the science of
global mental health.
Acknowledgements
We thank Carol Manion at FHI 360 for her assistance
with the literature search.
Conflict of interest: None declared.

KEY MESSAGES
 Social inclusion is an important outcome measure for the field of global mental health, but its
measurement is complicated by varying definitions and concepts.
 There are currently very few instruments that purport to measure social inclusion, or the closely
related concept of social integration, thereby highlighting the need for more research in this area,
particularly in cross-cultural adaptation and use.
 Based on a review of the literature and existing instruments, we suggest that a comprehensive
measure of social inclusion should capture a person’s sense of belonging in the community, level
of participation in community and civic life, sense of agency and capacity to choose whether to
participate; and also opportunities for and barriers to participation.

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