Skip to main content
Download PDF
Download ePub

Measuring social exclusion in healthcare settings: a scoping review

International Journal for Equity in Health volume 17, Article number: 15 (2018) Cite this article

Abstract

Background

Social exclusion is a concept that has been widely debated in recent years; a particular focus of the discussion has been its significance in relation to health. The meanings of the phrase “social exclusion”, and the closely associated term “social inclusion”, are contested in the literature. Both of these concepts are important in relation to health and the area of primary healthcare in particular. Thus, several tools for the measurement of social exclusion or social inclusion status in health care settings have been developed.

Methods

A scoping review of the peer-reviewed and grey literature was conducted to examine tools developed since 2000 that measure social exclusion or social inclusion. We focused on those measurement tools developed for use with individual patients in healthcare settings. Efforts were made to obtain a copy of each of the original tools, and all relevant background literature. All tools retrieved were compared in tables, and the specific domains that were included in each measure were tabulated.

Results

Twenty-two measurement tools were included in the final scoping review. The majority of these had been specifically developed for the measurement of social inclusion or social exclusion, but a small number were created for the measurement of other closely aligned concepts. The majority of the tools included were constructed for engaging with patients in mental health settings. The tools varied greatly in their design, the scoring systems and the ways they were administered. The domains covered by these tools varied widely and some of the tools were quite narrow in the areas of focus. A review of the definitions of both social inclusion and social exclusion also revealed the variations among the explanations of these complex concepts.

Conclusions

There are several definitions of both social inclusion and social exclusion in use and they differ greatly in scope. While there are many tools that have been developed for measuring these concepts in healthcare settings, these do not have a primary healthcare focus. There is a need for the development of a tool for measuring social inclusion or social exclusion in primary healthcare settings.

Background

The concept of “social exclusion” has become more prominent in discussions across many disciplines over the last number of decades. Politics, sociology, health and economics are just a few fields that have explored this complex idea and adapted it. There are many definitions of social exclusion but generally it describes the state of disadvantage faced by particular groups who are felt to be removed from mainstream society, and who cannot fully participate in normal life [1]. The phrase social exclusion originated in 1970s France when Socialist politicians began discussing the adversity faced by ‘les exclus’; a group of citizens who were not provided for by the state social security net [2]. The European Commission later introduced the term social exclusion into discussions alongside the term “poverty” for many programmes and initiatives from the early 1990s [3,4,5]; this culminated with 2010 being named as the European Year for Combating Poverty and Social Exclusion. Atkinson, when writing about the close relationship between social exclusion and poverty, said that an “analysis of social exclusion can broaden the discussion of well-being by considering dimensions beyond income poverty ... Being poor can lead to exclusion, but exclusion is more than just being poor, it is about participation” [3, 6]. Shaw and colleagues went further to explain that the term social exclusion can also encompass people “who may be stigmatized and marginalized, such as people with HIV/AIDS, who might not be considered in traditional analyses of economic deprivation” [7]. The government of the United Kingdom (UK) had also championed the idea of focusing on exclusion, establishing a specific Social Exclusion Unit (SEU) in 1997, which became part of the Office of the Deputy Prime Minister to drive this agenda across government departments and policymaking activity [3, 8, 9]. Many international bodies, such as the World Bank and the International Labour Organization, have also adopted the concept of social exclusion for use in their spheres of influence [10,11,12]. Commentators have discussed the apparent rise in popularity of this relatively new term social exclusion; one wrote that “conventional measures of poverty and deprivation were considered inadequate to capture the alienation, isolation or ‘exclusion’ from socially normative functioning” [13]. Others felt that this ‘new’ concept could also be seen as more acceptable politically and less stigmatising for those people who are actually affected by it [10, 14]. The widespread adoption of the term has been met with scepticism by others who have been critical of the move from focusing mainly on low levels of income as the primary cause of disadvantage; saying that now much of the blame for being socially excluded rests with the individual themselves, conveniently shifting the focus away from those with power and influence in society [14,15,16].

The closely related term “social inclusion” has also become popular in the related literature and in international policymaking. Charles Fraser gave a basic explanation of this term in 1999 when he said, “Social inclusion must come down to somewhere to live, something to do and someone to love. It’s as simple – and as complicated – as that” [17]. In Ireland, the term social inclusion has been adopted widely and appears frequently in policy documents across various sectors, particularly in health. The now disbanded Combat Poverty Agency defined social inclusion as “a series of positive actions to achieve equality of access to goods and services, to assist all individuals participate in their community and society, to encourage the contribution of all persons to social and cultural life and to be aware of, and to challenge all forms of discrimination”, clearly putting an onus on the government to be proactive in this regard [18].

The precise definitions of both social exclusion and social inclusion are highly contested. There is a growing body of literature that seeks to clarify the nuances of each term and the implications the various definitions have for corrective action and policymaking [4, 8, 10, 14, 19, 20]. Popay and colleagues reported that the definitions used to explain the concept of social exclusion generally fell into two broad categories: those that documented the many things that a person or group could be excluded from and those definitions that sought to explain a broader “relational” approach that looked more closely at the mechanisms and societal imbalances that led to and perpetuated social exclusion [8, 21]. Omtzigt concluded that that “definitions are caught between trying to provide an exhaustive list of everything the socially excluded is excluded from and listing the processes underlying the poverty and social exclusion” [22]. In recent years media reports and newspaper articles have begun to use these terms more frequently and without adequate explanation when reporting on a wide variety of societal problems and this seems only to add to the confusion around this terminology [23, 24].

Why relate social exclusion to health?

Social exclusion is often mentioned as one of the social determinants of health. Actions to alleviate this state or the processes of exclusion are seen as crucial in addressing the health needs of all, and the health needs of marginalised groups in particular [7, 25]. A 2010 World Health Organization (WHO) report on poverty and social exclusion stated that these two factors were the “driving forces of health inequities for millions of people across the 53 Member States of the European Region” [26]. Groups that are commonly mentioned in the context of social exclusion and health include people who experience homelessness, people who are problem drug users, people who engage in sex work, Gypsies and Travellers and people with disabilities [27, 28]. Other sources mention numerous additional groups at risk of social exclusion: people who are unemployed, people who are migrants and refugees, people with mental health problems, women and children, older people, rural dwellers, people leaving institutions and single parent families [3, 29]. The seminal 2008 WHO World Health Report advised that making primary healthcare universal would ensure that “health systems contribute to health equity, social justice and the end of exclusion” [30]. This report and the subsequent 2010 WHO Europe report reinforced the significance of the role that health systems and primary healthcare have in addressing social exclusion and improving the health status of populations [26]. The authors summarised that “action to improve the health of disadvantaged populations should …. be grounded in a human rights approach to health and the values and principles of primary health care”, and highlighted the need to include “communities experiencing poverty and social exclusion in the design, implementation, monitoring and evaluation of policy and practice” [26].

Possibly the clearest discussion of the links between social exclusion and health took place in preparation for the 2008 WHO Commission on Social Determinants of Health. A subgroup of the Commission, called the Social Exclusion Knowledge Network (SEKN), was established in 2006 to investigate and report definitively on the relationship between these two concepts. The final SEKN report summarised that “social exclusion processes result in a continuum of inclusion/exclusion characterized by inequalities in; access to resources (means that can be used to meet human needs), capabilities (the relative power people have to utilize the resources available to them) and rights. This continuum results in health inequities. Social exclusion influences health directly through its manifestations in the health system and indirectly by affecting economic and other social inequalities that influence health. These inequalities contribute to social exclusion processes, creating a vicious circle” [8]. This detailed explanation clearly sets out that social exclusion, the problems that cause it, and those that derive from it, critically affects the health of individuals and populations.

This description links closely with the ethos of the United Nations Sustainable Development Goals (SDG’s), and goal number three in particular which is concerned with health and wellbeing across the life-course [31]. This SDG mentions the effective management of conditions such as HIV and substance abuse and the introduction of universal health coverage among other targets. This reflects the suggestion that improving the health status of such socially excluded groups may improve the health of the population as a whole. This also overlaps with the argument from some authors that health should be considered a human right and that a rights framework should be used to set appropriate standards and allocate responsibility for the improvement of the health status of certain groups in society [32].

Why relate social exclusion to primary healthcare?

The field of primary healthcare is the ideal place to seek to document and analyse social exclusion in relation to health. Primary healthcare has wide population coverage in most countries. Primary healthcare services, such as general practice, work to alleviate many of the causes and ill effects of social exclusion on a daily basis – primary healthcare professionals understand that to cure or attempt to resolve the health problems of many of their vulnerable patients, they often need to find solutions to the exclusionary processes being experienced by those patients, as well as dealing with the actual medical issues. The UK’s Royal College of General Practitioners (RCGP) and National Health Service (NHS) have developed guidance specific to primary healthcare professionals and health service managers relating to the care of socially excluded groups [27, 29]. The advent of commissioning [where local health trusts in England and Wales plan and purchase services locally based on evidence of need] as a method of planning and funding community health services there has seen a focus on developing the case for service provision to groups traditionally described as socially excluded. Evidence is used to generate reports clearly outlining poor health outcomes for socially excluded groups when compared to the general population and then proposals are sought for possible interventions or adaptations to services in primary healthcare settings in order to attempt to close these health gaps [27, 28].

In 1995, Dr. Iona Heath wrote that general practitioners (GPs) often develop a deep understanding of the lives of their patients, and that GPs “see, every day, how society functions in a way which systematically undermines the health of its most vulnerable members” [33]. The conclusion that she and other authors have reached is that primary healthcare professionals, who work in such proximity to many socially excluded groups, have an onus to advocate and act on behalf of these patients [34,35,36]. For example, a GP may see and treat a person with community-acquired pneumonia using antibiotics and advise when to return if symptoms worsen. If that same person with the pneumonia is a person who injects drugs and who is rough sleeping, then the GPs advice and management may be different. He or she may attempt to secure hostel accommodation for that person, give information on where to obtain meals, help to locate an addiction support worker for the patient, discuss the safe storage of medications and possibly plan an early clinical review of the patient. Existing measures of success in primary healthcare interventions with marginalised patients are generally limited to the traditional disease mortality and morbidity outcomes; but there is the possibility that these do not capture the essence of life and health as a socially-excluded person. Bearing these factors in mind, we are seeking to discover if the degree of social exclusion a person is experiencing – in all its complexity and with the ambiguity associated with the terminology – could be an appropriate measure for use in primary healthcare settings.

This scoping review was therefore developed to address the following specific questions: how are social exclusion and social inclusion defined in relation to health, and how are social exclusion and social inclusion measured at the individual level in healthcare settings. Measuring the degree of social exclusion of a person attending a healthcare service could allow their status to be monitored over time, and potentially show that certain healthcare interventions reduce social exclusion. This may demonstrate that health policies and health system interventions aimed at marginalised and socially excluded groups have tangible benefits. A scoping review allows us to summarise the characteristics of measures of social exclusion and social inclusion that have previously been developed, and highlight any gaps in the extant evidence. Scoping reviews do not typically involve detailed critical appraisal of the included work, thereby allowing a variety of both peer-reviewed and grey literature to be included.

Methods

This scoping review of the literature was conducted by applying the methodological framework set out by Levac and colleagues, which was based on prior work by Arksey and O’Malley [37, 38]. The steps include (i) identifying research questions, (ii) identifying all relevant studies, (iii) selecting significant studies, (iv) charting the relevant data, and then (v) summarising and reporting the results.

Identifying relevant studies

To find publications related to these research questions we searched electronic databases, reference lists and key websites for both peer-reviewed papers and grey literature. The databases accessed included Academic Search Complete, CINAHL, EconLit, Medline, Social Sciences Full Text, Web of Science, EMBASE and Psyc-INFO. The search strategy for these databases included three rows of search terms to be applied to the titles and abstracts of publications. These were Row 1: “social incl*” OR “social excl*” OR “social marginal*”, Row 2: health* and Row 3: measure* OR frame* OR index OR indic* OR monitor* OR scale OR tool OR instrument. The specific websites that were searched included those of the United Nations Development Programme, the World Bank and the WHO.

Selecting the studies

For this review, final inclusion and exclusion criteria were developed as the searching and exploration of the resulting papers took place [37]. Criteria included work published in English between January 2000 and January 2017 from any country. Publications to be included were peer-reviewed research, published reports, editorials, commentaries and PhD theses. Publications for inclusion had to relate primarily to social exclusion or social inclusion and their measurement in relation to health. For the exclusion criteria documents such as conference abstracts and book reviews, publications not relating primarily to social exclusion or social inclusion and its measurement in relation to health and publications reporting on biological or physiological responses to exclusion were omitted. The lead author was responsible for screening the titles and abstracts of all document using the agreed inclusion and exclusion criteria. The co-authors were then consulted at regular intervals during the review process to discuss the emerging results, and to resolve any issues arising in the search process. For the results, we focused on measurement tools looking at social inclusion or social exclusion at the individual patient level, and their supporting publications.

Charting the data and reporting the results

The details of each of the measurement tools included in the final scoping review are displayed in Table 1 under the headings of (i) name of the tool, (ii) whether it mentions primarily social exclusion or social inclusion, (iii) the target population group for the tool, (iv) the purpose of the tool, (v) a brief background on the tool, (vi) the number of items included in the tool, (vii) how the tool reports results, and (viii) how it is administered to participants. A number of review papers were discovered during the searches and these are noted on the table in Additional file 1. A sample of the definitions of social exclusion and social inclusion referenced in the background papers for each of the twenty-two tools is also included in Tables 3 and 4.

Table 1 Measurement Tools
Full size table

Results

Flow diagram

The empiric and grey literature searches were carried out as detailed above. A total of 170 documents were included in the final scoping review. The process is displayed in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram in Fig. 1 [39]. From these documents, 22 tools or measures for the assessment of individual-level social inclusion or social exclusion, or the measurement of very closely related concepts, were identified and charted in Table 1. Additional file 1 provides details on the background literature linked to each of the 22 tools described in Table 1. Having located the background literature naming each tool, attempts were made to contact the authors of each tool by email. They were asked to provide a copy of the original tool for scrutiny. One row of Table 1 is incomplete as we were unable to obtain the original Human Givens (HG) tool [40], and we had to rely on scant secondary information to describe this measure [41]. We have therefore used the denominator 21 (rather than 22 tools) when describing characteristics of the tools.

Fig. 1
figure 1

Contains the PRISMA flow diagram of the search process

Full size image

Measurement tools discovered

Fourteen of the tools (14/21) mentioned in Table 1 below look at the measurement of the concept of social inclusion specifically, another tool (1/21) was described as a measure of both social inclusion and social exclusion, and then the remaining six tools discovered (6/21) did not mention the specific measurement of either concept in their supporting literature. Instead, they looked at the closely linked concepts of participation, integration, recovery and vulnerability. There were no scales or tools found that were developed for the measurement of social exclusion alone.

The majority (15/21) of the tools were developed and used with patients attending mental health services of some kind. A further four of the tools (4/21) were devised for use with both those attending mental health services and other groups; including members of the general population, people who are migrants and those with traumatic brain injury. Only three (3/21) of the measures found were not to have been developed specifically with a focus on mental health; these were for use with people who experience homelessness and people with disabilities.

When exploring the origin and background of each of the tools the following became apparent:

  • Four of the tools (4/21) were based on other earlier measures that have also been included in the Table 1; the Social and Community Opportunities Profile Chinese version (SCOPE-C) was based on the earlier Social and Community Opportunities Profile (SCOPE), the Composite Measure of Social Inclusion (CMSI) was partially based on the Community Integration Questionnaire (CIQ), the Living in the Community Questionnaire (LCQ) was based on the Activity and Participation Questionnaire (APQ-6) and the Mental Health Recovery Star (MHRS) was based on the Homeless Outcomes Star (HOS).

  • Three of the tools (3/21) were based on previous quantitative surveys or national censuses carried out in their country of origin; the Social Inclusion Questionnaire User Experience (SInQUE), the Social Inclusion Scale/Measure (SIS/SIM) and the APQ-6.

  • Two (2/21) tools developed for use in homeless service settings were described as having been developed to meet the specific needs of people there in a ‘bottom-up’ process involving staff and service users.

When reviewing the administration of the tools, the number of items or questions included in each tool varied; with 121 questions asked in the long version of the SCOPE too, compared to four questions in the measure of Multidimensional Social Inclusion (MSI). Three (3/21) of the tools had both a long and short version of the tool developed; the SCOPE, the Australian Community Participation Questionnaire (ACPQ) and the Participation Scale (PS). Completion of the majority (20/21) of the tools involved self-reported questionnaires or interviews of patients by staff of researchers. One tool (1/21), the Staff Survey of Social Inclusion (SSSI), was carried out by staff at the mental health service without the relevant patient being involved in the assessment.

The outputs of the tools varied substantially:

  • 13/21 reported some form of a score of social exclusion or social inclusion.

  • 3/21 looked at the total number of hours spent on activities that may be related to social inclusion (CMSI, APQ-6, SSSI).

  • 3/21 resulted in the development of a visual map of the social inclusion status of the person in question (HOS, MHRS, Inclusion Web [IW]).

  • 2/21 resulted in qualitative answers only that were available for further analysis, or used to prompt discussion between the person being assessed and relevant service providers (EMILIA Project Questionnaire [EPQ], MSI).

Specific domains of measurement tools

Each of the 22 measurement tolls has been included in Table 2 below, displaying the domains covered in their questions. The most common domain seen was Social Networks (referred to in some way in all 22 tools); which included all aspects of interaction with family members and friends, and feeling accepted by them. Community and Safety (17/22) included the ideas of feeling part of community and feeling safe in that setting. The domain of Leisure, Cultural & Religious (14/22) was concerned with regularly taking part in these types of activities. Usefulness and Potential (7/22) was concerned with a person feeling able to contribute positively to society and being able to fulfil personal potential. Rights and Freedoms (3/22) looked at freedom to express oneself and being aware of personal rights. The Other category was utilised for domains that arose only once or twice when analysing the tools; including themes as diverse as political engagement, hopefulness and offending.

Table 2 Domains Included in Measurement Tools
Full size table

Definitions

There are a wide variety of definitions of both social exclusion and social inclusion documented in the literature. Several review papers list some of the many definitions, and compare the elements that these definitions do and do not include [9, 14, 42, 43]. Additional file 1 summarises the background literature relating to each of the 22 tools selected for this scoping review. It is notable that many of the papers cited in Additional file 1 do not have a clear definition of what is meant by social exclusion or social inclusion, despite discussing the measurement of these concepts. Some authors did not definitively choose any one definition and instead listed a number of existing ones, while others combined elements of various definitions in an effort to provide clarity [41, 44, 45]. Of the papers that did set out a clear definition at the outset, it was one from the World Bank that appeared most often [46]. One paper included a definition of social inclusion apparently composed by the authors themselves [47]. A selection of the definitions cited in the papers is included in Table 1, Additional file 1 and other commonly cited definitions are listed in Tables 3 and 4 below.

Table 3 Definitions of Social Exclusion
Full size table
Table 4 Definitions of Social Inclusion
Full size table

Discussion

Statement of principal findings

This scoping review found that the concepts of social inclusion and social exclusion, while often described as abstract and lacking clarity, have both been discussed and measured at the individual level in relation to health. This review identified 22 relevant measurement tools across the peer-reviewed and grey literature. The majority of these tools were developed for measuring these concepts in mental health settings, and it is not clear why this field predominates. It is also unclear as to why there are so many of these measurement tools, even in relation to mental health. The tools that are listed have been developed and utilised in a number of different countries, and by researchers from various backgrounds and disciplines.

Discussion of findings

Tools

The number of tools that have been created since the year 2000 is striking. It is likely that the lack of agreement on definitions and the domains that should be included for measurement are factors. The background papers reported in Additional file 1 highlight that the work associated with these tools has been published in a wide variety of research areas including journals relating to psychiatry, general mental health, occupational therapy, disability, rehabilitation, development, homelessness and social inclusion itself. This highlights the point that the concepts of social inclusion and social exclusion are felt to be relevant to researchers and practitioners across many disciplines, but this may have led to duplication when it came to the development of measurement tools.

It is obvious that the concepts of social inclusion and exclusion are of great importance to mental health researchers and clinicians. Authors have explained that the social exclusion can contribute to mental illness, but also “improving social inclusion of the individual is an important contributor to recovery” [48, 49]. The measurement of social inclusion status and its changes over time in patients who are engaging with treatment for mental health problems are seen as tangible outcomes in mental health clinical settings; they are considered useful alongside the more traditional measures of symptom control. One report on mental health promotion explains that “social inclusion for an individual means access to supportive relationships, involvement in group activities and civic engagement” [50]. Encouraging the social inclusion and reintegration of people with mental health problems into society has also become an important policy goal internationally [51, 52]. One possible reason for this is recognition of the immense, and increasing, economic and social burden of mental ill health worldwide [53,54,55]. The basis for this goal is the idea that an individual with mental illness who receives appropriate and timely treatment will eventually become more engaged and included in society, making it more likely that they will be able to re-enter the workforce and contribute.

The literature pertaining to two of the tools in particular, the SCOPE and the LCQ, highlighted that the authors had conducted extensive searches for existing measures of social exclusion and social inclusion prior to beginning their own work. Both tools were developed as part of large-scale commissioned research projects: with the SCOPE tool resulting from work on a Health Technology Assessment carried out for the UK’s National Institute for Health Research, and the LCQ being developed by the Australian Mental Health Outcomes and Classification Network for their Government Mental Health Information Strategy Standing Committee. The creators of four other tools (SCOPE-C, CMSI, LCQ and MHRS) also explained that their particular measure was based on an existing tool. For example, the SCOPE-C was developed by adapting the SCOPE tool from the UK for the language and cultural context of people in Hong Kong. The researchers conducted qualitative studies on the meaning of social inclusion in that country and then altered the domains and questions asked as part of the tool accordingly. The LCQ was a tool produced by adding questions on topics such as housing and physical health to the existing APQ-6 tool following feedback from relevant groups.

It is notable that none of the tools stated that its aim was to measure only social exclusion. Fourteen of the tools described their aim was to measure social inclusion, and one (the EPQ) indicated it was meant for the measurement of both social inclusion and exclusion. It is unclear why social exclusion is a less frequently used term in this context: it may be related to variations in the language used around the concepts of social inclusion and social exclusion, or the perception that social exclusion is more difficult to measure when compared with social inclusion. Many authors use both terms when explaining the one issue, for example; “Despite efforts in Europe to enhance social inclusion of mental health service users, they still remain a highly socially excluded group” [56]. This implies that inclusion and exclusion are the opposites of each other. This may then lead to the presumption that if you measure social inclusion, you have assessed both social inclusion and social exclusion status.

There are a number of concepts very closely aligned with social inclusion and exclusion that were measured by seven of the 22 tools described. For example, the SIS tool for patients in mental health settings with schizophrenia focuses on the concept of social integration. When we look more closely at this tool, all of the domains it covers overlap with those of other social inclusion measures described in Table 2. The authors of a review on social inclusion and global mental health that included this SIS tool explained that “a variety of terms, including ‘social inclusion’ and ‘social integration’, are used interchangeably in both research and policy documents” [57]. While the definitions of social inclusion and social exclusion themselves are unclear, the fact that authors and policy makers also use other similar, but equally ill-defined, terms in discussion of these complex concepts may add to the confusion around the issue. Other tools included in Table 1 seek to assess concepts such as participation, recovery and vulnerability. The domains these tools cover are also very similar to the domains covered by those tools explicitly stating that they are measures of social inclusion.

The SEKN report was critical of the approach taken by many researchers and policy makers who had discussed social exclusion as a state, rather than focussing on the exclusionary processes that led to and perpetuated that vulnerable state [8]. The work of the SEKN could have offered some clarity on questions relating to the concept of social exclusion, and yet there is little mention of the report in the background literature of the tools that were published after 2008. Subsequent research on social exclusion measurement did not seem to rely on the SEKN report for reference or a definition of the concept of social exclusion. This may have been because the SEKN team only discussed the measurement of exclusion at global, regional and country level; there was no analysis of individual level measurement. More recently, some authors such as Adam and Potvin have taken the work of the SEKN and adapted it to focus more on individual level social exclusion [58]. Another reason the SEKN work may not feature is that the SEKN authors stated “inclusion in some measures of a variety of health indicators as a component of or risk factor for social exclusion, rather than an outcome of the experience, all make it difficult to ‘measure’ the impact of social exclusion in health outcomes”. This statement highlighted possible confusion around the many factors that may lead to social exclusion, compared with those that may have resulted from it. Finally, the SEKN authors reported that social exclusion was too complex a subject to be adequately assessed by quantitative methods alone, declaring that “exclusionary processes can only be adequately ‘represented’ through both quantitative and qualitative data – through both indicators and stories” [8]. The majority of the individual level tools detailed in Table 1 result in quantitative scores or some other measure of social inclusion or social exclusion, and only two tools collected qualitative answers. This may have been because quantitative scores are easier to conduct and to repeat over time in busy clinical settings, and this is precisely where tools included were mainly intended for use.

Significantly, none of the 22 individual tools discovered were specifically developed or used in general primary healthcare settings. As primary healthcare is the point of initial contact the majority of people have with the health system and it includes such a wide variety of components, it can offer help for many health issues. Primary healthcare, and universal health coverage in particular, is discussed as part of the solution to many of the causes and end results of social exclusion. It would therefore seem to be a logical place to try to assess and monitor social inclusion and social exclusion – but this does not yet appear to be the case.

Domains

It makes sense that the two domains most frequently found in the 22 individual tools displayed in Table 2 are Social Networks and Community; these are referred to in 22/22 and 17/22 respectively. What is surprising, however, is that many tools omit domains that would seem to be important for any measure of social inclusion or social exclusion to cover. For example, ‘housing’ is only mentioned in 10/22. Having somewhere secure to live tends to be considered a fundamental need to be dealt with before more complex issues such as health problems can be addressed. References to important issues such as Stigma and knowledge of Rights and Freedoms are even less frequently seen in the tools included, being included in only 4/22 and 3/22 respectively. In addition, the fact that there are over thirty different domains mentioned across the 22 tools we investigated highlights the fact that work in this area is hampered by the lack of a consensus definition and agreement on the domains that should be accounted for in any measure.

Definitions

As stated, there are multiple definitions of both social exclusion and social inclusion across the published and grey literature. Several reports and papers tabulate and compare the various definitions [11, 14, 43]. Looking at the selection of definitions of social exclusion in Table 3, it is notable that only those of the UK SEU [59] and the WHO SEKN [8] specifically mentioned health as a factor to be considered in relation to exclusion. The language used by the creators of the various definitions is very interesting; particularly around those of social inclusion (Table 4), with authors using very positive and encouraging words and phrases such as “virtuous circle of improved rights”, “new opportunities”, “full access”, “having control”, “a community that cares” and “enabling everyone”. These terms could be considered more optimistic and acceptable than the negative terms often used to explain the concept of social exclusion. This may explain why governments and others have adopted the positive language of social inclusion when developing policies or even establishing initiatives (e.g. the European Social Inclusion Strategy, the Australian Social Inclusion Board).

Definitions of social exclusion can be broadly categorised: some address the problems associated with exclusion [59, 60], others detail what aspects of life people are excluded from [61], and others mention the various levels on which exclusion is seen to operate [8]. Room described many of the recurring ideas seen across various definitions when he stated that social exclusion was ultimately a “multidimensional, dynamic and relational concept” [14, 62, 63].

Strengths and weaknesses of this study

The strengths of this scoping review include the fact that a wide range of databases and grey literature sources were searched by the authors. Manual searches of the reference lists of included publications were carried out, and we attempted to contact all relevant tool authors. This resulting review also contains publications across a number of disciplines, and work from a variety of countries is included. We included a number of review papers, mostly looking at mental health, adding to the likelihood that all relevant individual measurement tools were included.

There were a number of limitations to this scoping review. Firstly, critical appraisal of the background papers or the resulting tools was not included as this was beyond the scope of this type of review. Some of the 22 tools included were previously validated and evaluated, others were not, and this was not taken into account for this publication. The authors were unable to contact all tool authors; this meant having to rely on secondary sources for descriptions of some tools, leaving some sections of the tables incomplete. The searches carried out were limited to papers in English, and those published since the year 2000.

Conclusions

This scoping review offers a comprehensive description of existing work on the measurement at the individual level in healthcare settings of social exclusion and social inclusion. We have firstly shown that there is a wide range of definitions of both terms in use, and they tend to focus on quite different aspects of social exclusion and social inclusion. Some definitions describe the problems associated with social exclusion, others mention the parts of life that people are excluded from, and others explain the levels that social exclusion operates on. We have listed the measurement tools developed for use with individual patients in healthcare settings. These tools vary in the number of items they include, how scores are allocated and in how they are administered. The majority of these tools were designed for use in mental health settings. These tools cover a wide variety of domains, perhaps highlighting the differing views of researchers and practitioners on what exactly is meant by the terms social exclusion and social inclusion. There is apparently no measurement tool intended specifically for use in primary healthcare settings for the measurement and monitoring of changes in social inclusion or social exclusion status. It would appear, therefore, that there is scope to develop a measurement tool for this purpose, or to modify an existing tool that covers most or all of the domains felt to be important in the context of primary healthcare.

Abbreviations

ACPQ:

Australian community participation questionnaire

APQ-6:

Activity and participation questionnaire

CIM / CIQ :

Community integration measure / questionnaire

CMSI :

Composite measure of social inclusion

DESC :

Downtown emergency service centre

EMILIA:

Empowerment of mental illness service users: lifelong learning and action

EPQ:

EMILIA project questionnaire

ESIQ:

Evaluating social inclusion questionnaire

GP:

General practitioner

HG:

Based on ‘The Human Givens’

HK:

Hong Kong

HOS:

Homeless outcomes star

IW:

Inclusion web

LCQ:

Living in the community questionnaire

MHRS:

Mental health recovery star

MSI:

Multidimensional social inclusion

NHS:

National Health Service

PRISMA:

Preferred reporting items for systematic reviews and meta-analyses

PS:

Participation scale

RCGP:

Royal College of general practitioners

SCOPE :

Social and community opportunities profile

SCOPE-C:

Social and community opportunities profile – Chinese version

SDG:

Sustainable development goal

SE:

Social exclusion

SEKN:

Social exclusion knowledge network

SEU:

Social exclusion unit

SI:

Social inclusion

SInQUE :

Social inclusion questionnaire user experience

SIQ:

Social inclusion questionnaire

SIS / SIM:

Social inclusion scale / Social inclusion measure

SIS:

Social integration survey

SNQ:

Support needs questionnaire

SSSI:

Staff survey of social inclusion

UK:

United Kingdom

USA:

United States of America

VAT:

Vulnerability assessment tool

WHO:

World Health Organization

References

  1. Piachaud D, Bennett F, Nazroo J, Popay J. Report of task group 9: social inclusion and social mobility. In: Task group submission to the marmot review; 2009. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.472.3665&rep=rep1&type=pdf. Accessed 10 Dec 2016.

    Google Scholar 

  2. Lenoir R. Les Exclus: Un Francais sur Dix. 1st ed. Paris: Editions du Seuil; 1974.

    Google Scholar 

  3. The World Bank. Social Exclusion and the EU’s Social Inclusion Agenda: Paper Prepared for the EU8 Social Inclusion Study The World Bank. 2007. http://siteresources.worldbank.org/INTECONEVAL/Resources/SocialExclusionReviewDraft.pdf. Accessed 15 Jan 2017.

  4. Peace R. Social exclusion: a concept in need of definition? Soc Policy J N Z. 2001;16:17–36.

    Google Scholar 

  5. Daly M. Social Exclusion as Concept and Policy Tempate in the European Union: Center for European Studies Working Paper Series #135: Minda de Gunzburg Center for European Studies Harvard University. 2006. https://ces.fas.harvard.edu/uploads/files/Working-Papers-Archives/CES_WP135.pdf. Accessed 12 Aug 2017.

  6. Atkinson AB. Poverty in Europe. Oxford: Wiley-Blackwell; 1998.

    Google Scholar 

  7. Shaw M, Dorling D, Smith GD. Poverty, social exclusion, and minorities. In: Marmot M, Wilkinson R, editors. Social determinants of health. 2nd ed. Oxford: Oxford University Press; 2005. p. 196–223.

    Google Scholar 

  8. Popay J, Escorel S, Hernández M, Johnston H, Mathieson J, Rispel L. Understanding and tackling social exclusion. Final report to the WHO Commission on Social Determinants of Health from the Social Exclusion Knowledge Network: World Health Organization. 2008. http://www.who.int/social_determinants/knowledge_networks/final_reports/sekn_final%20report_042008.pdf. Accessed 01 Mar 2016.

  9. Hayes A, Gray M, Edwards B. Social inclusion: origins, concepts and key themes: Australian Institute of Family Studies. 2008. http://apo.org.au/system/files/8799/apo-nid8799-90181.pdf. Accessed 14 Feb 2017.

    Google Scholar 

  10. Estivill J. Concepts and Strategies for Combating Social Exclusion: An Overview: International Labour Organization. 2003. http://www.ilo.org/public/english/protection/socsec/step/download/96p1.pdf. Accessed 25 Apr 2017.

  11. The World Bank. Inclusion Matters: The Foundation for Shared Prosperity: The World Bank. 2013. http://documents.worldbank.org/curated/en/114561468154469371/pdf/814780PUB0Incl00Box379838B00PUBLIC0.pdf. Accessed 10 Jan 2017.

  12. Atkinson AB, Marlier E. Analysing and Measuring Social Inclusion in a Global Context: United Nations Department of Economic and Social Affairs. 2010. http://www.un.org/esa/socdev/publications/measuring-social-inclusion.pdf. Accessed 14 Dec 2016.

  13. Labonté RN, Hadi A, Kauffmann XE. Indicators of Social Exclusion and Inclusion: A Critical and Comparative Analysis of the Literature: Institute of Population Health University of Ottawa. 2011. http://www.rrasp-phirn.ca/images/stories/docs/workingpaperseries/wps_dec11_report_final-.pdf. Accessed 12 July 2017.

  14. Mathieson J, Popay J, Enoch E, Escorel S, Hernandez M, Johnston H et al. Social Exclusion Meaning, Measurement and Experience and Links to Health Inequalities: A Review of Literature: WHO Social Exclusion Knowledge Network. 2008. http://www.who.int/social_determinants/media/sekn_meaning_measurement_experience_2008.pdf.pdf. Accessed 01 Feb 2016.

  15. Beall J. Globalization and social exclusion in cities: framing the debate with lessons from Africa and Asia. Environ Urban. 2002;14(1):41–51.

    Article  Google Scholar 

  16. Gore C, Figueiredo JB, editors. Social exclusion and anti-poverty policy: a debate. Geneva: International Labour Organization; 1997.

    Google Scholar 

  17. Dunn S. Creating Accepting Communities: Report of the Mind Inquiry Into Social Exclusion and Mental Health Problems. London: Mind; 1999. http://www.siis.net/documentos/Digitalizados/900204_Creating%20Accepting%20Communities.pdf. Accessed 01 Apr 2017.

  18. Kelly R. Social Inclusion Policy Community & Enterprise Directorate Clare County Council. 2010. https://www.clarecoco.ie/community/publications/social-inclusion-policy-6116.pdf. Accessed 24 May 2017.

  19. Taket A, Crisp BR, Nevill A, Lamaro G, Graham M, Barter-Godfrey S. Introduction. In: Taket A, Crisp BR, Nevill A, Lamaro G, Graham M, Barter-Godfrey S, editors. Theorising social exclusion. 1st ed. London: Routledge; 2009.

    Google Scholar 

  20. Davey S, Gordon S. Definitions of social inclusion and social exclusion: the invisibility of mental illness and the social conditions of participation. Int J Cult Mental Health. 2017;10(3):229–37.

    Article  Google Scholar 

  21. Popay J. Understanding and tackling social exclusion. J Res Nurs. 2010;15(4):295–7.

    Article  Google Scholar 

  22. Omtzigt DJ. Survey on Social Inclusion: Theory and Policy: Oxford University Institute for Global Economic Development. 2009. http://ec.europa.eu/regional_policy/archive/policy/future/pdf/1_omtzigt_final_formatted.pdf. Accessed 11 Mar 2017.

  23. Topping A. Looting ‘fuelled by social exclusion’. The Guardian. 2011. https://www.theguardian.com/uk/2011/aug/08/looting-fuelled-by-social-exclusion. Accessed 10 Aug 2017.

  24. Borkhataria C. Social exclusion that leads to ‘fake news’ conspiracy theories could be the secret of Donald Trump's success. The Mail Online. 2017. http://www.dailymail.co.uk/sciencetech/article-4243214/Donald-Trump-supporters-felt-socially-excluded.html#ixzz4p9xopA4E. Accessed 05 Aug 2017.

  25. Wilkinson R, Marmot MG, editors. Social determinants of health: the solid facts. 2nd ed. Copenhagen: World Health Organization Regional Office for Europe; 2003.

    Google Scholar 

  26. World Health Organization Regional Office for Europe. Poverty and Social Exclusion in the WHO European Region: Briefing on policy issues produced through the WHO/European Commission equity project: World Health Organization Regional Office for Europe. 2010. http://www.euro.who.int/__data/assets/pdf_file/0004/127525/e94499.pdf. Accessed 12 Oct 2015.

  27. Gill P, MacLeod U, Lester H, Hegenbarth A. Improving Access to Health Care for Gypsies and Travellers, Homeless People and Sex Workers: Royal College of General Practitioners Clinical Innovation and Research Centre. 2013. http://www.rcgp.org.uk/news/2013/december/~/media/Files/Policy/A-Z-policy/RCGP-Social-Inclusion-Commissioning-Guide.ashx. Accessed 20 Aug 2016.

  28. Cabinet Office Social Exclusion Task Force & Department of Health. Inclusion Health Evidence Pack: Cabinet Office Social Exclusion Task Force and Department of Health. 2010. http://webarchive.nationalarchives.gov.uk/+/http:/www.cabinetoffice.gov.uk/media/346574/inclusion-health-evidencepack.pdf. Accessed 15 Sep 2016.

  29. Department of Health. Inclusion Health: Improving Primary Care for Socially Excluded People: Department of Health. 2010. http://webarchive.nationalarchives.gov.uk/20130124054057/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114365.pdf. Accessed 12 May 2016.

  30. World Health Organization. Primary Care: Now More Than Ever: World Health Organization Press. 2008. http://www1.paho.org/hq/dmdocuments/2010/PHC_The_World_Health_Report-2008.pdf. Accessed 01 Mar 2014.

  31. United Nations Department of Economic and Social Affairs. Sustainable development goal 3: ensure healthy lives and promote well-being for all at all ages. United Nations Department of economic and Social Affairs. 2016. https://sustainabledevelopment.un.org/sdg3. Accessed 20 Aug 2017.

  32. Gruskin S, Ferguson L. Using indicators to determine the contribution of human rights to public health efforts. Bull World Health Organ. 2009;87(9):714–9.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Heath I. What is needed. The mystery of general practice. London: Nuffield Provincial Hospitals Trust; 1995.

    Google Scholar 

  34. Gill PS, Hegenbarth A. Embedding social inclusion in general practice: time for action. Br J Gen Pract. 2013;63(617):622–3. https://0-doi-org.brum.beds.ac.uk/10.3399/bjgp13X675223.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Yanicki SM, Kushner KE, Reutter L. Social inclusion/exclusion as matters of social (in)justice: a call for nursing action. Nurs Inq. 2015;22(2):121–33.

    Article  PubMed  Google Scholar 

  36. Le Boutillier C, Croucher A. Social inclusion and mental health. Br J Occup Ther. 2010;73(3):136–9.

    Article  Google Scholar 

  37. Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5(1):69.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8 https://0-doi-org.brum.beds.ac.uk/10.1080/1364557032000119616.

  39. Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Open Med. 2009;3(2):123–30.

    Google Scholar 

  40. Williamson M, Allen A. The human givens. Exeter: Mind South West; 2006.

    Google Scholar 

  41. Huxley P, Evans S, Munroe M, Webber M, Burchardt T, Knapp M et al. Development of a Social Inclusion Index to capture subjective and objective domains (Phase I): National Co-ordinating Centre for Research and Methodology. 2006. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.469.5761&rep=rep1&type=pdf. Accessed 14 Jul 2016.

  42. Australian Mental Health Outcomes and Classification Network (AMHOCN). Development of the Living in the Community (LCQ) measure of social inclusion for use in mental health Final report: Australian Mental Health Outcomes and Classification Network (AMHOCN). 2015. http://www.amhocn.org/sites/default/files/publication_files/living_in_the_community_questionnaire_lcq_final_report.pdf. Accessed 01 Oct 2016.

  43. Coombs T, Nicholas A, Pirkis J. A review of social inclusion measures. Aust N Z J Psychiatry. 2013;47(10):906–19.

    Article  PubMed  Google Scholar 

  44. Chan K, Evans S, Ng Y-L, Chiu MY-L, Huxley PJ. A concept mapping study on social inclusion in Hong Kong. Soc Indic Res. 2014;119(1):121–37.

    Article  Google Scholar 

  45. Mezey G, White S, Thachil A, Berg R, Kallumparam S, Nasiruddin O, et al. Development and preliminary validation of a measure of social inclusion for use in people with mental health problems: the SInQUE. Int J Soc Psychiatry. 2012;59(5):501–7.

    Article  PubMed  Google Scholar 

  46. The World Bank. Social development: Sector results profile. The World Bank. 2013. http://www.worldbank.org/en/results/2013/04/14/social-development-results-profile. Accessed 24 Jul 2017.

  47. Marino-Francis F, Worrall-Davies A. Development and validation of a social inclusion questionnaire to evaluate the impact of attending a modernised mental health day service. Ment Health Rev J. 2010;15(1):37–48.

    Article  Google Scholar 

  48. Harrison D, Sellers A. Occupation for mental health and social inclusion. Br J Occup Ther. 2008;71(5):216–9.

    Article  Google Scholar 

  49. Pachoud B, Plagnol A, Leplege A. Outcome, recovery and return to work in severe mental illnesses. Disabil Rehabil. 2010;32(12):1043–50.

    Article  PubMed  Google Scholar 

  50. World Health Organization. Promoting Mental Health: Concepts, Emerging Pvidence, Practice: World Health Organization. 2004. http://www.who.int/mental_health/evidence/MH_Promotion_Book.pdf. Accessed 01 May 2017.

  51. Social Exclusion Unit (SEU) Office of the Deputy Prime Minister. Mental Health and Social Exclusion: Social Exclusion Unit Report Summary: Office of the Deputy Prime Minister. 2004. http://www.nfao.org/Useful_Websites/MH_Social_Exclusion_report_summary.pdf. Accessed 23 Nov 2016.

  52. Department of Health and Children. A Vision for Change: Report of the Expert Group on Mental Health Policy: Government of Ireland. 2006. http://www.hse.ie/eng/services/publications/Mentalhealth/Mental_Health_-_A_Vision_for_Change.pdf. Accessed 10 May 2016.

  53. Vigo D, Thornicroft G, Atun R. Estimating the true global burden of mental illness. Lancet Psychiatry. 2016;3(2):171–8.

    Article  PubMed  Google Scholar 

  54. World Health Organization. Mental Health Action Plan 2013–2020: World Health Organization. 2013. http://apps.who.int/iris/bitstream/10665/89966/1/9789241506021_eng.pdf?ua=1. Accessed 13 June 2017.

  55. Vos T, Allen C, Arora M, Barber RM, Bhutta ZA, Brown A, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the global burden of disease study 2015. Lancet. 2016;388(10053):1545–602.

    Article  Google Scholar 

  56. Ramon S, Griffiths CA, Nieminen I, Pedersen M, Dawson I. Towards social inclusion through lifelong learning in mental health: analysis of change in the lives of the EMILIA project service users. Int J Soc Psychiatry. 2009;57(3):211–23.

    Article  Google Scholar 

  57. Baumgartner JN, Burns JK. Measuring social inclusion—a key outcome in global mental health. Int J Epidemiol. 2014;43(2):354–64.

    Article  PubMed  Google Scholar 

  58. Adam C, Potvin L. Understanding exclusionary mechanisms at the individual level: a theoretical proposal. Health Promot Int. 2016; https://0-doi-org.brum.beds.ac.uk/10.1093/heapro/daw005.

  59. Social Exclusion Unit (SEU) Office of the Deputy Prime Minister. The Social Exclusion Unit: Office of the Deputy Prime Minister. 2004. http://webarchive.nationalarchives.gov.uk/+/http:/www.cabinetoffice.gov.uk/media/cabinetoffice/social_exclusion_task_force/assets/publications_1997_to_2006/seu_leaflet.pdf. Accessed 04 Feb 2017.

  60. Sayce L. From psychiatric patient to citizen: overcoming discrimination and social exclusion. London: Palgrave MacMillan; 2000.

    Book  Google Scholar 

  61. Council of the European Union. Joint Report by the Commission and the Council on Social Inclusion: Council of the European Union. 2003. http://ec.europa.eu/employment_social/soc-prot/soc-incl/final_joint_inclusion_report_2003_en.pdf. Accessed 12 July 2017.

  62. Room G. Poverty and social exclusion: the new European agenda for policy and research. In: Room G, editor. Beyond the threshold: the measurement and analysis of social exclusion. Bristol: Policy Press; 1995.

    Google Scholar 

  63. Room G, Berghman J, Bouget D, Cabrero G, Hansen F, Hartmann-Hirsch C et al. Observatory on National Policies to Combat Social Exclusion: Second Annual Report: Commission of the European Communities Directorate General Employment, Social Affairs and Industrial Relations. 1992. http://aei.pitt.edu/34932/1/A1082.pdf. Accessed 2 Nov 2016.

  64. Stewart G, Sara G, Harris M, Waghorn G, Hall A, Sivarajasingam S, et al. A brief measure of vocational activity and community participation: development and reliability of the activity and participation questionnaire. Aust N Z J Psychiatry. 2010;44(3):258–66.

    Article  PubMed  Google Scholar 

  65. Berry HL, Rodgers B, Dear KB. Preliminary development and validation of an Australian community participation questionnaire: types of participation and associations with distress in a coastal community. Soc Sci Med. 2007;64(8):1719–37.

    Article  PubMed  Google Scholar 

  66. Lloyd C, King R, Moore L. Subjective and objective indicators of recovery in severe mental illness: a cross-sectional study. Int J Soc Psychiatry. 2010;56(3):220–9.

    Article  PubMed  Google Scholar 

  67. McColl MA, Davies D, Carlson P, Johnston J, Minnes P. The community integration measure: development and preliminary validation. Arch Phys Med Rehabil. 2001;82(4):429–34.

    Article  CAS  PubMed  Google Scholar 

  68. Lloyd C, Waghorn G, Best M, Gemmell S. Reliability of a composite measure of social inclusion for people with psychiatric disabilities. Aust Occup Ther J. 2008;55(1):47–56.

    Article  PubMed  Google Scholar 

  69. Wright N, Stickley T. Concepts of social inclusion, exclusion and mental health: a review of the international literature. J Psychiatr Ment Health Nurs. 2013;20(1):71–81.

    Article  CAS  PubMed  Google Scholar 

  70. Waghorn G, Chant D, King R. Classifying socially-valued role functioning among community residents with psychiatric disorders. Am J Psychiatr Rehabil. 2007;10(3):185–221.

    Article  Google Scholar 

  71. Stickley T, Shaw R. Evaluating social inclusion. Ment Health Pract. 2006;9(10):14–21.

    Google Scholar 

  72. Hacking S, Bates P. The inclusion web: a tool for person-centered planning and service evaluation. Ment Health Rev J. 2008;13(2):4–15.

    Article  Google Scholar 

  73. Coombs T, Reed C, Rosen A. Developing the living in the community questionnaire: reporting the social outcomes of mental health care. Asia Pacific J Soc Work Dev. 2016;26(2–3):178–89.

    Article  Google Scholar 

  74. Dickens G, Weleminsky J, Onifade Y, Sugarman P. Recovery star: validating user recovery. Psychiat Online. 2012;36(2):45–50.

    Article  Google Scholar 

  75. Killaspy H, White S, Taylor TL, King M. Psychometric properties of the mental health recovery star. Br J Psychiatry. 2012;201(1):65–70.

    Article  PubMed  Google Scholar 

  76. Onifade Y. The mental health recovery star. Mental Health Soc Inclusion. 2011;15(2):78–87.

    Article  Google Scholar 

  77. Pinfold V. ‘Building up safe havens…all around the world’: users’ experiences of living in the community with mental health problems. Health Place. 2000;6(3):201–12.

    Article  CAS  PubMed  Google Scholar 

  78. Burns S, MacKeith J, Graham K. Using the Outcomes Star. Impact and Good Practice: Triangle Consulting. 2008. http://www.outcomesstar.org.uk/wp-content/uploads/Q_Outcomes-Star-Impact-and-good-practice.pdf. Accessed 14 Oct 2016.

  79. Johnson G, Pleace N. How do we measure success in homelessness services?: critically assessing the rise of the homelessness outcomes star. Eur J Homelessness. 2016;10(1):31–51.

    Google Scholar 

  80. Petersen VA, Ellis P, Lorenz R, Armbrecht E. An interventional study of guiding homeless persons to self-reliance using the outcomes star™ for homelessness. Clin Scholars Rev. 2014;7(1):30–41.

    Article  Google Scholar 

  81. Van Brakel WH, Anderson AM, Mutatkar R, Bakirtzief Z, Nicholls PG, Raju M, et al. The participation scale: measuring a key concept in public health. Disabil Rehabil. 2006;28(4):193–203.

    Article  PubMed  Google Scholar 

  82. World Health Organization. International Classification of Functioning, Disability and Health: ICF: World Health Organization. 2001. http://apps.who.int/classifications/icfbrowser/. Accessed 04 May 2017.

  83. Huxley P, Evans S, Madge S, Webber M, Burchardt T, McDaid D, et al. Development of a social inclusion index to capture subjective and objective life domains (phase II): psychometric development study. Health Technol Assess. 2012; https://0-doi-org.brum.beds.ac.uk/10.3310/hta16010.

  84. Chan K, Chiu MY-L, Evans S, Huxley PJ, Ng Y-L. Application of SCOPE-C to measure social inclusion among mental health services users in Hong Kong. Community Ment Health J. 2016;52(8):1113–7.

    Article  PubMed  Google Scholar 

  85. Chan K, Evans S, Chiu MY-L, Huxley PJ, Ng Y-L. Relationship between health, experience of discrimination, and social inclusion among mental health service users in Hong Kong. Soc Indic Res. 2015;124(1):127–39.

    Article  Google Scholar 

  86. Chan K, Huxley PJ, Chiu MY-L, Evans S, Ma Y. Social inclusion and health conditions among Chinese immigrants in Hong Kong and the United Kingdom: an exploratory study. Soc Indic Res. 2016;126(2):657–72.

    Article  Google Scholar 

  87. Huxley PJ, Chan K, Chiu M, Ma Y, Gaze S, Evans S. The social and community opportunities profile social inclusion measure: structural equivalence and differential item functioning in community mental health residents in Hong Kong and the United Kingdom. Int J Soc Psychiatry. 2016;62(2):133–40.

    Article  PubMed  Google Scholar 

  88. Killaspy H, White S, Lalvani N, Berg R, Thachil A, Kallumpuram S, et al. The impact of psychosis on social inclusion and associated factors. Int J Soc Psychiatry. 2014;60(2):148–54.

    Article  PubMed  PubMed Central  Google Scholar 

  89. Gordon D, Adelman L, Ashworth K, Bradshaw J, Levitas R, Middleton S et al. Poverty and Social Exclusion in Britain: Joseph Rowntree Foundation. 2000. http://eprints.whiterose.ac.uk/74234/1/Document.pdf. Accessed 11 Jul 2017.

  90. Margrove KL, Heydinrych K, Secker J. Waiting list-controlled evaluation of a participatory arts course for people experiencing mental health problems. Perspect Public Health. 2013;133(1):28–35.

    Article  PubMed  Google Scholar 

  91. Secker J, Hacking S, Kent L, Shenton J, Spandler H. Development of a measure of social inclusion for arts and mental health project participants. J Ment Health. 2009;18(1):65–72.

    Article  Google Scholar 

  92. Wilson C, Secker J. Validation of the social inclusion scale with students. Soc Inclusion. 2015;3(4):52–62.

    Article  Google Scholar 

  93. Kawata AK, Revicki DA. Reliability and validity of the social integration survey (SIS) in patients with schizophrenia. Qual Life Res. 2008;17(1):123–35.

    Article  PubMed  Google Scholar 

  94. Dorer G, Harries P, Marston L. Measuring social inclusion: a staff survey of mental health service users’ participation in community occupations. Br J Occup Ther. 2009;72(12):520–30.

    Article  Google Scholar 

  95. Bates P, Butler S. Community connections and creative mental health practice. In: Lymbery M, Butler S, editors. Social work ideals and practice realities. Basingstoke: Palgrave Macmillan; 2004. p. 107–32.

    Chapter  Google Scholar 

  96. Davis FA, Burns J. The development and properties of the support needs questionnaire. Soc Inclusion. 2015;3(4):63–75.

    Article  Google Scholar 

  97. Wolfensberger W. Social role valorization: a proposed new term for the principle of normalization. Ment Retard. 1983;21(6):234–9.

    CAS  PubMed  Google Scholar 

  98. Downtown Emergency Service Center (DESC). Vulnerability Assessment Tool for Determining Eligibility and Allocating Services and Housing for Homeless Adults.: Downtown Emergency Service Center (DESC). 2009. http://www.uwcnvi.ca/web_documents/cfp_hps_hf_appendix_b_-_sample_assessment_tool.pdf. Accessed 10 Aug 2016.

  99. Ginzler JA, Monroe-DeVita M. Downtown Emergency Service Center’s Vulnerability Assessment Tool for individuals coping with chronic homelessness: A psychometric analysis: The University of Washington. 2010. https://www.desc.org/wp-content/uploads/2017/10/DESC-VAT-WIMHRT.pdf. Accessed 01 Feb 2017.

  100. Room G. Social quality of Europe: perspectives on social exclusion. In: Beck W, Van der Maesen L, editors. The social quality of Europe. The Hague: Kluwer Law International; 1997. p. 255–62.

    Google Scholar 

  101. Brennan A, Rhodes J, Tyler P. New findings on the nature of economic and social exclusion in England and the implications for new policy initiatives: discussion paper 101. Cambridge: Department of Land Economy, University of Cambridge; 1998.

    Google Scholar 

  102. Power A. Social Exclusion. Royal Soc Arts J. 2000;2(4):47–51.

    Google Scholar 

  103. Burchardt T, Le Grand J, Piachaud D. Degrees of exclusion: developing a dynamic, multidimensional measure. In: Hills J, Le Grand J, Piachaud D, editors. Understanding social exclusion. Oxford: Oxford University Press; 2002. p. 30–43.

    Google Scholar 

  104. Levitas R, Pantazis C, Fahmy E, Gordon D, Lloyd E, Patsios D. The Multi-Dimensional Analysis of Social Exclusion: Department of Sociology and School for Social Policy & Institute for Public Affairs University of Bristol. 2007. http://roar.uel.ac.uk/1781/1/multidimensional.pdf. Accessed 14 Sep 2016.

  105. Sayce L. Social inclusion and mental health. Psychiatr Bull. 2001;25(4):121–3.

    Article  Google Scholar 

  106. Bates P, Repper J. Social inclusion - a framework for evaluation. Life Day. 2001;5(2):18–23.

    Article  Google Scholar 

Download references

Acknowledgements

Not applicable.

Funding

No external funding was applied for or used in the conduct of this research. Employment of POD as a researcher is funded by the University of Limerick Graduate Entry Medical School and the Health Service Executive Social Inclusion Division.

Availability of data and materials

Data generated or analysed during this study are included in this published article, and in its Additional file.

Endnotes

Abbreviations of names of tools in Tables below are suggested; some have been suggested by the creators of the tools themselves, others have been originally used by previous review authors.

Author information

Authors and Affiliations

  1. Graduate Entry Medical School, University of Limerick, Limerick, Ireland

    Patrick O’Donnell & Khalifa Elmusharaf

  2. School of Medicine, Clinical Science Institute, National University of Ireland, Room 342, Galway, Ireland

    Diarmuid O’Donovan

Authors
  1. Patrick O’Donnell
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Diarmuid O’Donovan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Khalifa Elmusharaf
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

POD, KE and DOD conceived the basic idea for the research. POD conducted early scoping searches, returning to KE and DOD at intervals for advice. POD and KE developed the detailed plan for conduct of comprehensive searches. Any difficulties with search process arising were discussed with KE at regular intervals. POD summarised all data found and presented it to KE and DOD for comment and feedback. POD drafted manuscript for publication that was commented on by KE and DOD. All authors have reviewed the final manuscript for submission. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Patrick O’Donnell.

Ethics declarations

Authors’ information

POD is a GP, Clinical Fellow in Social Inclusion and a PhD student at the University of Limerick Graduate Entry Medical School. DOD is Senior Lecturer in Social and Preventive Medicine at the National University of Ireland Galway School of Medicine and Director of Public Health at Health Service Executive West. KE is Senior Lecturer in Public Health at the University of Limerick Graduate Entry Medical School.

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Additional file

Additional file 1:

Contains the background literature for each measurement tool in Tables 1 and 2. (DOCX 26 kb)

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

O’Donnell, P., O’Donovan, D. & Elmusharaf, K. Measuring social exclusion in healthcare settings: a scoping review. Int J Equity Health 17, 15 (2018). https://0-doi-org.brum.beds.ac.uk/10.1186/s12939-018-0732-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://0-doi-org.brum.beds.ac.uk/10.1186/s12939-018-0732-1

Keywords

International Journal for Equity in Health

ISSN: 1475-9276

Contact us