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Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black & Minority Ethnic Groups (looking forward to World Sight Day 2007) Research regarding B&ME Groups, VI and take-up of Services

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Page 1: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

Our Vision Too – Community ViewsMark R D Johnson

Mary Seacole Research Centre

OPSIS Conference: Focus on the Needs of Vision Impaired People from Black & Minority

Ethnic Groups

(looking forward to World Sight Day 2007) Research regarding B&ME Groups, VI

and take-up of Services

Page 2: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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

England - Census 2001

White British

"Minority Groups"

White Irish

White Other

Asian Indian

Asian Pakistani

Asian Bangladeshi

Asian Other

Black Caribbean

Black African

Chinese

Mixed

Black Other

Other

Page 3: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The Population of BirminghamBirmingham Population: Male %

20.17

5.88

1.21

2.8769.87

ASIAN

BLACK

CHINESE

MIXED

WHITE

Birmingham Population: Female %

18.9

6.35

1.09

2.8570.81

ASIAN

BLACK

CHINESE

MIXED

WHITE

Page 4: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The Visual Impairment RegisterBirmingham - Males, 2003

5.5 11.7

0.5

0.8

2259.5

Black (groups)

S Asian (groups)

Chinese/ S-E Asian

Other #

DNA *

White

Birmingham - Females, 2003

3.37.5

0.20.5

23.5

65

Black (groups)

S Asian (groups)

Chinese/ S-E Asian

Other #

DNA *

White

Page 5: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The Literature Review

Poor quality evidence baseHigh 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 surgeryMore cataract among South Asian

origins

Page 6: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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.

Page 7: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

General Consensus

under-use of services by minority groups

and possibly of under-registration. low levels of knowledgefailure to recognise needs that can

be addressed. Many short-term, unreported and

under-evaluated ‘projects’

Page 8: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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

Page 9: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

Improvement in Service Uptake Requires

Assertive Outreach, Cultural Competence, Partnership with minority ethnic groups

We would add: Commitment by management Resources Persistence

Page 10: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The Aim of the ProjectTo 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.

Page 11: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black
Page 12: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

Some New & Refreshed Insights

a greater level of housing need culturally specific lifestyle issuesimpact 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

Page 13: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The ‘Good Practice Model’Stage 1: Project Initiation: The

Conceptualisation and Initial PlanningStage 2: Recruit Key Worker(s).Stage 3: Review Local ServicesStage 4: Create Network of StakeholdersStage 5: Recruit Community FacilitatorsStage 6: Develop Project Agenda / Topic

Guide

Page 14: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

The Model – Part Two

Stage 7: Conduct InterviewsStage 8: Review, Analyse and FeedbackStage 9: Devise or Refine Training and/or

Information PacksStage 10: Take Appropriate Action –

Further InterventionStage 11: EvaluateStage 12: (IF Appropriate) Establish and

Integrate Learning into Mainstream Practice

And How do we do that?

Page 15: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

Two Checklists

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

Page 16: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black
Page 17: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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

Page 18: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black
Page 20: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

Community ViewsJasbir BehalForum – Community, Statutory, VOs &c.Sight Loss/Eye Health Information Fairs

Lobbying

Publications

More research and development

Page 21: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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)

Page 22: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

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

Page 23: Our Vision Too – Community Views Mark R D Johnson Mary Seacole Research Centre OPSIS Conference: Focus on the Needs of Vision Impaired People from Black

‘Co-ordinates’ orContact Details

CEEHD - Mary Seacole Research CentreDe Montfort University266 London Road, Leicester LE2 1RQTel: 0116 201 3906 (fax: 0116 201 3805)

[email protected] website: www.dmu.ac.uk/msrc or

www.ethnic-health.org.ukwww.library.nhs.uk/ethnicitywww.pocklington-trust.org.ukNB: [email protected]