Social Inclusion Project Team Peter Huxley UoW Swansea Sherrill Evans UoW Swansea

1. Social Inclusion Project Team Peter Huxley UoW Swansea Sherrill Evans UoW Swansea Maria Munroe UoW Swansea Martin Webber IoP Tanya Burchardt LSE Martin Knapp LSE David McDaid LSE Acknowledgements to: Peter Bates NDT Jenny Secker Anglia Ruskin David Morris NIMHE SI programme Nicola Vick NIMHE SI programme Fabian Davies Oxleas Trust

2. Social Inclusion Project Aims Describe the key components of social inclusion Identify existing measures of the various components of social inclusion Draft the possible content of an index of social inclusion for testing among general population and treated and untreated mental health samples

3. Social Inclusion Project Methods FOUR main components (1) Review of literature An update of the LSE literature review on social exclusion and a further search with particular reference to existing measures of social inclusion (2) A review of existing measures Including web searches & the work of the NIMHE research and evidence coalition network (3) Concept mapping exercise in a number of groups, including members of the general public, mental health and other professionals, and older people groups) (4) Expert group synthesis

4. Social inclusion Project Useful conceptual material and background papers Commins (1993) Beck (1997) Berman and Phillips (2000) Berger Schmitt and Noll (2000) (Appendix 1) Burchardt, Le Grand and Piachaud (2002) Atkinson (2002) EFILWC (2003) Roeher Institute (2003) ZUMA (2005) Levitas et al (2006) Combat Poverty Agency (Ireland) Better policies, Better outcomes (2006) New Policy Institute/ Joseph Rowntree Trust (2006)

5. Social inclusion Project Concept Mapping groups: Nine groups: IoP group Mental health service users Older people group Student group Women’s group NIMHE social inclusion network group Social inclusion and employment group Voluntary organisations and BME group General population group

6. Focus groups - Concept mapping Concept maps are graphical tools for organizing and representing knowledge which is sometimes used for measurement development . There are six steps in the concept mapping process: STEP ONE: Preparation STEP TWO: Generating statements STEP THREE: Structuring of statements STEP FOUR: Representation of statements STEP FIVE: Interpretation of maps STEP SIX: Utilisation of the concept maps Social Inclusion Project

7. Social inclusion Project 66 participants 444 statements 66 clusters

8. Most frequent themes (seven or more groups) Most frequent Social network and support e.g. friends and family Second Opportunities Neighbourhood and built environment e.g. ghettos, deprivation, surroundings Financial stability Employment Disadvantaged and excluded groups Acceptance including being part of society Third Participation in society and social support (local society rather than wider) Discrimination including stigma Representation: being visible and listened to; having a say Participation (wider) Housing Health and well being Engaging in community Diversity, difference, integration Social inclusion Project

9. Social inclusion Project Third (continued) Decreased exclusion/opposite of exclusion/including people who have been excluded Choice/Freedom/Control/Power/Responsibility Access Service provision Fourth (five or six groups) Confidence/Sense of Purpose/Fulfilment/Achievement Isolation Having a meaningful, recognised and valued role Barriers to inclusion Understanding People’s behaviour Transport and mobility Safety, fear, crime, conflict Respect Religion (ignorance and tolerance) Education

10. Social inclusion Project Web searches Search Engines Look Smart; Dogpile; NQMC; Question Bank; Google Advanced; Copernic; Firefox Terms Social Inclusion Index; Socially inclusion Hits - 1955 Conclusion – academic sites, EU, NIMHE etc added almost nothing to conventional searching

11. Social inclusion Project CONVENTIONAL LITERATURE SEARCH STRATEGY DATA BASES Web of Knowledge (Science Citation Index; Social Science Citation Index) CSA (Assia; Eric; Sociological Abstracts; Social Services Abstracts) Ovid (Medline, Old medline; Embase; Psychinfo; IBSS; HMIC)

12. Social inclusion Project SEARCH TERMS Varied slightly between search engine due to the capabilities of each one. Keyword search on inclusion using the following truncated and/or specific terms OVID: Social$ inclu$ OR social capital OR social$ cohesi$ OR social$ engage$ OR social$ involve$ OR social participation OR social interaction$ OR social$ integrat$ OR social responsibilit$ OR social wellbeing OR social well-being CSA: Social(ly) inclusion/ed/ive, Social Capital, Social(ly) cohesion/ive, Social(ly) engage/d/ment, Social(ly) invole/d/ment, Social participation, Social interaction/s, Social integration/ed, Social responsibility/ies, Social wellbeing/well-being Web of Knowledge: OVID truncated terms followed by a within search search for CSA specific terms

13. Social inclusion Project SEARCH TERMS Title searches for measure/s using the same specific terms in each database: measure OR measures OR measurement OR index OR indices OR indicator OR indicators OR scale OR scales OR tool OR tools OR assessment OR assessments OR instrument OR instruments OR questionnaire OR questionnaires OR form OR forms OR profile OR profiles OR test OR tests OR schedule OR schedules. Social inclusion and measures searches were combined in all databases, to produce a more focused search Combined searches were limited according to the criteria (next slide) as far as possible The ability to limit searches varied by database, and only OVID was able to exclude duplicates effectively

14. Social inclusion Project Criteria Abstract English Language Humans Peer review journals 1948-2007 Tests and measures (OVID only) Process 2 people reviewed and categorised all abstracts Papers reporting on measures of social inclusion or contributing variables eg participation, or including useful conceptual material, were retrieved and read, again by 2 people

15. Social inclusion Project Literature Search Results

16. Social inclusion Project 144 potentially relevant papers when duplicates removed These were retrieved and classified as follows: 1 Measures of inclusion or components 2 Conceptual papers relevant to social inclusion or measurement Measures of other concepts or none of the above 68 papers were selected for inclusion in the review, on the basis that they met criteria 1) or 2)

17. Social inclusion Project The search did not produce any existing measures of social inclusion. Of the 68 papers reviewed: 9 measures of aspects of inclusion or component measures were reported (participation; community integration, social cohesion) and these are reviewed in more detail 16 conceptually useful papers were identified relating to measurement (eg, that proposed items; models, indicators, Wilson -Adelaide) 43 papers were excluded on the basis of relevance, quality or because they measured other concepts

18. Social inclusion Project The two broad approaches to the measurement of inclusion emerged Individual, inward looking, psychological, subjective, internal referents Societal, outward looking, objective, social indicators, external referents

19. Social inclusion Project INDIVIDUAL APPROACH Roeher Institute, Canada Crawford (2003) suggests that two key themes emerge from this perspective. People with disabilities want to be socially included in the sense that they, like others, want: To participate as valued, appreciated equals in the social, economic, political and cultural life of the community (i.e., in valued societal situations) and To be involved in mutually trusting, appreciative and respectful interpersonal relationships at the family, peer and community levels. That is, people want inclusion in the situations that most people take for granted and want to be welcomed and valued there.

20. Crawford (2003) lists the socially valued situations that people want to participate in as (egs): • Post-secondary education or training. • A job or career and income security in the event of unemployment. • An affordable, healthy & pleasant home that meets individual & family needs. • A safe, secure, healthy and pleasant neighbourhood. • Justice in the event of violence or abuse. • Recreational opportunities and chances for cultural/artistic expression. • Health, social and related services. • Clubs, faith communities, voluntary associations. • Opportunities/venues for civic involvement Valued interpersonal situations in which people want to participate include: • Family, a variety of friendships and relationships with trusted, respectful others in the community. Social inclusion Project

21. SOCIAL INDICATOR APPROACH • The second major approach to the measurement of inclusion is the social indicators approach which uses existing (statistical) data sources in an aggregated form to assess the success or change, in social inclusion terms, of various policies and strategies. • These policies are often area-based, for example the ‘Social Inclusion Measure’ groups in the Irish republic’s regions, or may relate to more local services, for example schools in Hampshire, or specific age groups (Tanton et al 2006) children at risk of exclusion in Australia. • Existing indicators are taken to represent aspects of inclusion, and these may or may not be aggregate into a single index. Social inclusion Project

22. Some of the issues related to this approach • How are indicator questions selected and tested? • Often no indication, commonly experts, sometimes that which is already available • Mental health service users often do not like the census or survey style questions and want them rephrased • It is possible to incorporate modules on specific issues (eg social capital in the HSE; QoL in the NPMS; Levitas social exclusion in the UKLHS) in existing surveys and over-sample particular groups – is this a route one would want to go down? • Work with existing research groups?

23. Social indicators research groups • European Social Survey – City University • GESIS - ZUMA • NPI/Rowntree • All have large accessible data sets Social inclusion Project

24. Social inclusion Project German Social Science Infrastructure Services ZUMA: Centre for Survey Research and Methodology, Mannheim Inclusion Indicators Currently the European System of Social Indicators is being implemented step by step by  ZUMA's Social Indicators Department. At this stage time series data are available at their website for 7 out of the projected 13 life domains: Population, household and family; Labour market and working conditions; Housing; Education and vocational training; Income; Standard of living and consumer patterns, Health; and Total life situation. The indicator system covers as a standard the previous EU-15 countries, Norway, Switzerland, Czech Republic, Hungary, Poland, as well as Japan and the U.S. as major reference societies. Successively, all the EU-25 member states will be covered systematically, as is already the case for numerous indicators.

25. Social inclusion Project ZUMA Indicators Life Domains Population, household and family Income, standard of living and consumer patterns Housing Health Transport Environment Leisure, Media and Culture Social Security Social and Political Participation and Integration Crime and public safety Education and vocational training Labour market and working conditions Total life situation

26. In the UK, Levitas et al were commissioned by the Cabinet Office to produce a measure of social exclusion • Levitas et al’s Bristol Social Exclusion Matrix has three major sections: • resources (material, access to services, social resources); • participation (economic, social, culture education and skills, political and civic); • quality of life (health and well-being, living environment, crime, harm and criminalization). Social inclusion Project

27. They examined 27 potential sources of data and selected the best available data on children, adults of working age and older people. • the Millennium poverty and social exclusion survey • the Families and young children survey • the Longitudinal survey of young people (ALSPAC) • the British household panel survey and the General Household Survey for adults of working age • English Longitudinal Study of Ageing (ELSA) for older groups. • Other options: - add a module to existing household surveys (but excludes excluded groups) Social inclusion Project

28. Social inclusion Project Review of measures Bates Key indicators for services MIND (SW) Human Givens Davis Valued Lifestyles Support Needs Pack Secker Inclusion measure (Huxley Social and community participation profile) Lev-Weisel (2003) Perceived Community Cohesion Van Brakelet al(2006) The Participation Scale Gierveld and van Tilburg (2006) Loneliness scale Lelieveldt (2004) Neighbourhood participation Sibley et al (2006) Impact on participation and autonomy questionnaire

29. Issues • Are there any adequate existing measures? No • Are there any component measures? Possibly • No combined indicator + subjective measures • Is a combined indicator desirable or possible? • Should we be looking at 6 measures, one indicator based and one perceived inclusion, for three major demographic groups? • Or one measure with a core and age specific modules?

30. Social inclusion Project

31. Question Structure within Domains • Opportunity of access to material resources/existence of rights (o) • Perceived access to resources/ perceived entitlements (s) • Participation /actual realisation of rights (o) • Perceived participation/perceived realisation of rights (s) • Choice/ improved or changed entitlements (s)

32. Participation From the ESRC Health Variations Programme Survey and National Psychiatric Morbidity Survey 80/100 feel leisure opportunities are restricted (cf 64) 83/100 want a more active social life (cf 62) 47/100 want to participate more fully in family activities (cf 28) 56/100 not a member of community groups ( cf 47) Satisfaction with leisure activity 3.7 (cf 4.3) (p<0.001)

33. From the ESRC Health Variations Programme Survey [South Manchester] Access and participation 5% employed compared to….. 61% 24 hour working week compared to.. 38 hours 53% seen friend last week compared to…. 80% 57% have a close friend compared to ……95% 16% contact + relatives less than monthly….3%

34. Social inclusion Project

35. Social inclusion Project Implications for Phase II Indicators and questions Best candidates: European Social Survey; ZUMA; NPI/Rowntree; Perceived inclusion Existing instruments? Choice – goals Cognitive appraisal of questions Age specific measures Psychometric testing

36. Social inclusion Project Psychometric Testing Validity tests vs other measures (eg participation scales; Anglia-Ruskin measure) Responsiveness over time (service context where inclusion change is the objective eg arts programmes, MIND SW or Oxleas) Beta-testing Construct experiment using standard measures on same subjects (Priebe et al 1999)

37. Social inclusion Project Potential international collaborations Prof Robert Bland, Tasmania Prof Sammy Chiu, Hong Kong Prof Lih-Rong Wang, Taiwan Prof Rick Beinecke, Boston Prof Bill Healy, Melbourne SCRENE (12 European States)

38. CSCR Centre for Social Carework Research University of Wales Swansea Singleton Park Swansea SA2 8PP P.J.Huxley@swansea.ac.uk S.Evans@swansea.ac.uk C.M.Baker@swansea.ac.uk