Research regarding B&ME Groups, VI and take-up of Services

1. Our Vision Too – Community ViewsMark R D JohnsonMary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black & Minority Ethnic Groups(looking forward toWorld Sight Day 2007) Research regarding B&ME Groups, VI and take-up of Services

2. Composition of ‘English’ Health & Social Care Users : 2001 13% from a ‘Minority’ group

3. The Population of Birmingham

4. The Visual Impairment Register

5. The Literature Review • Poor quality evidence base • High levels of diabetes lead to an expectation of worse eye health. • Juvenile inherited eye conditions • Raised levels of glaucoma in African Caribbean populations, • Keloid scarring – hinders surgery • More cataract among South Asian origins

6. The Research Base: • The ‘visual impairment’ research literature tends to ignore issues of race and ethnicity: • that relating to ‘race relations and ethnic diversity’, largely excludes attention to sight loss.

7. General Consensus • under-use of services by minority groups • and possibly of under-registration. • low levels of knowledge • failure to recognise needs that can be addressed. • Many short-term, unreported and under-evaluated ‘projects’

8. Factors Affecting Use of Services • Ethnic Differences in Patterns of Disease • Perceptions of Health, Body and Disease • Cultural and Language differences in Descriptions • Accessibility of Services (time and place) • (Previous experiences of) Encounters with Services • Alternative Treatment Options • Lifestyle, Socio-Economic Status, Religion and Cultural practices • Racism – direct, personal, indirect or institutional • Language, Education and Availability of Information • Attitude, Awareness and Skill of Clinical staff

9. Improvement in Service Uptake Requires • Assertive Outreach, • Cultural Competence, • Partnership with minority ethnic groups • We would add: • Commitment by management • Resources • Persistence

10. The Aim of the Project • To examine and develop ways of ensuring that services are more effectively delivered to people from black and minority ethnic (BME) communities with visual impairments (VI). • To raise awareness of sight loss issues and services in black and minority ethnic communities and voluntary sector groups working in those communities • To raise the capacity of (VI) service providers to recognise the specific needs of people from minority ethnic groups, and establish the best ways of meeting these.

12. Some New & Refreshed Insights • a greater level of housing need • culturally specific lifestyle issues • impact on social and religious life • lack of social and family understanding • low expectations – ‘inevitable aging’ • stigma or “false” pride • ‘learned helplessness’ • Responses have to be community-specific

13. The ‘Good Practice Model’ • Stage 1: Project Initiation: The Conceptualisation and Initial Planning • Stage 2: Recruit Key Worker(s). • Stage 3: Review Local Services • Stage 4: Create Network of Stakeholders • Stage 5: Recruit Community Facilitators • Stage 6: Develop Project Agenda / Topic Guide

14. The Model – Part Two • Stage 7: Conduct Interviews • Stage 8: Review, Analyse and Feedback • Stage 9: Devise or Refine Training and/or Information Packs • Stage 10: Take Appropriate Action – Further Intervention • Stage 11: Evaluate • Stage 12: (IF Appropriate) Establish and Integrate Learning into Mainstream Practice And How do we do that?

15. A Checklist of issues to raise with and within communities and organisations NB: Disability Rights are part of the Law A Toolkit Checklist for Service Providers NB: Race Equality Schemes are now required by Law Two Checklists

17. Key Recommendations: • Sight Loss support services need to recruit staff from within minority communities • Information must be translated into minority languages • Information needs to be actively promoted through community organisations • Sustained effort may be needed to overcome suspicion based on past experiences • Previous initiatives have foundered because of a lack of continuity – a longer-term perspective is required to bring change and create better relationships

19. The Outcome!

20. Community Views • Jasbir Behal • Forum – Community, Statutory, VOs &c. • Sight Loss/Eye Health Information Fairs • Lobbying • Publications • More research and development

21. One new study • Glaucoma awareness and perceptions of risk among African-Caribbeans in Birmingham, UK • Vinette Cross, Peter Shah, Rustom Bativala, Peter Spurgeon • Diversity in Health and Social Care • Volume 2, Number 2, June 2005 , pp. 81-90(10)

22. Further reading (or via WWW) • Our Vision Too: Improving the Access of Ethnic Minority Visually Impaired People to appropriate services Seacole Research Paper 4 Leicester: MSRC with Housing Corporation and Thomas Pocklington Trust (Asesha Morjaria-Keval and MRD Johnson), February 2005 • ‘Ethnicity, Sight Loss and Invisibility’ British Journal of Visual Impairment Vol 25,1 :23-33 (Johnson MRD, Morjaria-Keval A) 2006 • Research Findings & Occasional Papers – www. pocklington-trust. org. uk

23. ‘Co-ordinates’ orContact Details • CEEHD - Mary Seacole Research CentreDe Montfort University266 London Road, Leicester LE2 1RQTel: 0116 201 3906 (fax: 0116 201 3805) • seacole@dmu.ac.uk • website: www.dmu.ac.uk/msrc or www.ethnic-health.org.uk • www.library.nhs.uk/ethnicity • www.pocklington-trust.org.uk • NB: minority-ethnic-health@jiscmail.ac.uk