Part 3b - Engaging with ...

Engaging with Black and other minority ethnic groups
Challenges in engaging with people of minority ethnic origin

Members of black and minority ethnic groups are often under-represented amongst service users. There is evidence that people are unaware of the availability of services, that services are not used because they are considered inappropriate, and that those who have used services felt that their needs were not being met. ¹

To make services more culturally sensitive and needs-led the ethnic perspective (which will include 'new' minority groups such as European asylum seekers) needs to be actively sought out. This is particularly important as the number of elders in the ethnic population will increase substantially over the next twenty years.

Institutional racism - a definition

This was defined in the Inquiry into the murder of Stephen Lawrence as:

The collective failure of an organisation to provide an appropriate and professional service to people because of their colour, culture or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination, through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping which disadvantages ethnic minority people. ²

The Social Services Inspectorate said :

In order to overcome institutional racism, Social Services Departments should re-think the approach of providing a common service for everyone and treating both black and white older people the same.³

Engaging more effectively with people from minority ethnic backgrounds

Investing time in building good relationships with communities will help to overcome suspicion and build confidence.

Successful agencies will:4

Have an effective equal opportunities policy
Train staff in multi-cultural awareness
Gather information about the minority groups in the area
Have formal links with communities, such as a liaison group or working party
Have informal links through a development worker or community project
Have demonstrated that change results from the information obtained

Other considerations:

Not surprisingly, there is a low response to self-completion postal surveys, even when targeted at the areas where minorities live. Names and addresses are often poorly recorded, so information may not reach the intended recipient.

One study got a better return by having liaison workers hand out surveys, and by taking them to community group meetings where explanations and assistance could be given.⁵

Telephone surveys may exclude minorities. One study found that telephone use was less popular amongst Asians, possibly because the body language and gesture that normally supplements face-to-face communication is lost.

Interviews are more successful, especially if the research is well publicised.

One study found the refusal rate amongst Asians was higher when the interviewer was white, but Asian interviewers did not affect the agreement of white subjects.⁶

Another study found that the Chinese community was most likely to decline an interview. The community suggested that they were not culturally comfortable with criticising authority.⁷

Interviewers matched by gender, ethnicity and language are desirable.

If interpreters are used to conduct interviews they need training in interview skills.

Focus group discussions can work well, sometimes needing to be single sex, and in familiar and convenient locations. One study used a Chinese restaurant.

Consider escorted travel for some women, appropriate food, and appropriate venues for meetings. For example, premises serving alcohol may be unacceptable.

Direct enquiries find high levels of dissatisfaction with services but this is not reflected in complaints, so agencies do not benefit from this feedback. Appropriate information about ways of making complaints may be lacking.

Beware of one-off projects. These can increase feelings of marginalisation.

Long-term community development approaches are needed, and links can be fostered by funding the development of community groups, who can then self-advocate and develop appropriate support.

A practice example:

Birmingham Community Care Special Action Project

The aim was to develop a carer's programme. Consultation meetings, where interpreters were available, were advertised through community and religious groups, but did not attract people of Asian and Caribbean African origin. The King's Fund was therefore commissioned to obtain an understanding of minority ethnic carers' needs.

Letters to carers distributed through voluntary and statutory agencies, leaflets to community centres, advice centres, mosques and temples, and a jingle played on every program on local radio over 2 weeks, produced little response.
What was most successful was a direct approach, identifying carers through service providers and health project link workers, once the community was well informed.

"What does seem to be important is the patient and careful building up of relationships with a variety of individuals in different networks who then act as intermediaries." ⁸

Some research findings

Johnson's review of studies on communication⁹

Johnson reviewed over 200 evidence based research studiesrelating to communication between individuals and practitioners and communities and service providers. Communication is a two-way process that is not simply linguistic, but relies on body language and gesture, and ways of viewing the world and explaining meaning. Inability to communicate is a feature of interactions between, for example, lay people and professionals, different socio-economic groups, young people and adults. Yet it tends to be people of minority ethnic origin who are stereotyped as 'hard to reach'. It is more appropriate to consider that it is service providers and practitioners that have the communication needs, rather than to locate the problem with the service user.

Information does need to take account of language. A Health Education Authority Survey¹⁰ in1995 found that of those giving their ethnic origin as:

Indian - 85% spoke English

Pakistani - 72% spoke English

Bangladeshi - less than 60% spoke English

Fewer older women were fluent in English, and significant numbers were unable to read any language. There is a diversity of languages, scripts, and formal and spoken language forms in an area like the Indian sub-continent, and there is no written form of some languages.

Written material should be in bilingual format, in English and the appropriate language, written specifically for the purpose rather than translated. Use of culturally appropriate pictures provide non-verbal cues, and formats such as tape or video might be used
Community involvement is needed to prepare appropriate information or survey instruments, and to ensure that the agency can interpret responses correctly
Only trained interpreters should be used

References

Alexander Z 1999 Study of Black, Asian and Ethnic Minority Issues Department of Health
Alexander Z 1999 as above
Alexander Z 1999 as above
McIver S 1991 Obtaining the Views of Black Users of Health Services King's Fund p18
Bowling 1992
Ahmad 1990 in McIver S 1994 as above
Swarup 1993 in McIver S 1994 as above
Jowell Larrier and Lawrence 1990 in McIver1994 as above
Johnson M 1996 Ethnic minorities, Health and Communication Research Paper in ethnic Relations no 24 Centre for Research in Ethnic Relations University of Warwick
Health Education Authority 1995

Other Resources

Hughes A 'Strategies for sampling black and minority ethnic populations' Journal of Public Health Medicine 1995 17 (2) 187-192

Presley F & Shaw A 1995 Race and Health: an information sources guide Kings Fund

The Refugee Council Information Service 020 7820 3042

Engaging with people with mental health problems

The majority of people with mental distress will not be seen by specialist services. They will be supported by friends, relatives and carers, or be treated by their GP, so it can be difficult to involve them because of their invisibility, and their isolation from each other.
People with mental health problems are also more likely to be mobile or to be homeless than others. There are 15,000 people in England with a severe and enduring mental illness, and 14 - 200 per 100,000 of those are considered difficult to engage.¹

Mental health has been at the forefront of service user involvement with a well-developed self-advocacy movement. 'From above' (professional-led) and 'from below' (users' own activities) models are distinguished, and it is suggested that top down initiatives have had limited impact.

Professional-led activities have often been of the consumerist model. This emphasises the individuals' rights - to information, to a clear procedure, to be consulted, and to complain if things go wrong. Mental health service users argue that if rights can't be exercised then this is an exercise in placation. The in-balance of professional power remains. See Arnstein's ladder of participation

'Bottom up' initiatives from service users themselves are often critical of the medical model of mental illness, challenging the way in which service users are regarded, and the worker/user relationship. ²

Service users are clear that they should play a role in shaping services, they are realistic about the stress this could create for them, and their own need of support for that role.²

Challenges in engaging with people with mental health problems:

It can be difficult to contact past users and those who don't use services
Some people may be too ill or distressed to take part at certain times, and medication can affect concentration
The nature of their illness may cause suspicion about the purpose of the exercise
Some service users may be alienated by their experiences of care and treatment
Sectioned and secure service users who have lost rights may be particularly critical
There are often problems with jargon, and there are differences in definitions between users and service providers ³

Engaging more effectively with people using mental health services

Consider:

Mobility and alienation make postal surveys or recruitment ineffective. Individuals might be contacted through mental health user or support groups, but many will have no such associations. Voluntary organisations providing information and support or supported accommodation might be another avenue for contact. One study⁴ used key workers to engage service users with severe and enduring mental health problems. (For a description of this research see Peer interviewing)

Involve users from the beginning. Start by establishing their agenda and definitions, using qualitative approaches such as one-to-one or group discussions. (See Focus Group Discussions

Use a variety of approaches to increase inclusiveness.

The stigma attached to mental illness increases concerns about confidentiality. Employ extra reassurance about confidentiality, for example, by keeping activities as independent of the service as possible. This will also encourage uninhibited expression of views.

Low self-esteem can mean low expectations. Since any judgement of the quality of a service relies on expectations, it may be more appropriate to ask for experience and judge that against an agreed standard of acceptability (such as standards developed by service users themselves). This is particularly important for long-stay users who have little to compare with. For example, levels of privacy could be established by asking specific questions with a yes/no answer, such as 'did all toilet doors have locks?' See Monitoring & standard setting

Use quality of life as a measure, not quality of service. Questions that tell you how the organisation is performing tell you nothing about the impact of the service on the individual.

It is suggested that the way forward is to promote activities that encourage service users to speak for themselves and understand their potential role in improving service quality. This might be achieved, for example, through assertion training, advocacy or supporting user groups and forums. Staff need support that helps them recognise the power differentials between themselves and service users so that they can avoid unconscious barriers to participation. (See Power)

An example of an initiative to involve people using mental health services

Northumberland User Voice is a project that aims 'to help service users to communicate their views and to influence the mental health services they receive.'

When the Mental Health Trust consulted with service users to find what would help them to take part in decision making, the need for a paid worker was identified, and in 1993 a co-ordinator was appointed. The project now has two full time workers and full-time admin support, managed by the local Community Health Council.

The project steering group of service users meets monthly with project workers. The group meets in various locality settings to allow service users from across the county to participate and hear about developments. The steering group is supported by an advisory panel of managers from the Health Authority, Trust, Social Services and regional user organisations.

The project supports existing user groups and promotes development of others, and facilitates networking of service users. It produces a quarterly newsletter and holds twice yearly user conferences. Service users are involved in the design and content of service information. They are involved in staff induction and training, and in appointments, including panels appointing senior managers. Users can also take up work placements with the User Voice team, and the project is taking part in the development of a caf� based User Centre.

As well as offering in-house training in communication and meeting skills, User Voice has worked with partners to develop a training course accredited by the Open College for service users becoming involved in shaping services.

Northumberland User Voice Amble House, St George's Hospital, Morpeth NE61 2NU

Some research findings

At the individual level

There is evidence that "When service users are involved in agreeing and reviewing [their care plan] the quality of care improves, and their satisfaction with services increases ".5

The government initiative to develop programmes of self-management for those with chronic conditions is welcomed as a way of increasing user involvement.⁶ (The Living with Long-term Illness Project www.Imca.demon.co.uk)

A randomised controlled trial in America found that although people in such programmes showed no difference in pain or psychological well-being to the control group, the study group did show improved management of symptoms, better communication with health professionals, and fewer hospital admissions.

A London Health Authority worked with the King's Fund: ⁷

To find effective ways of engaging users of mental health services
To establish views of current and future services
To inform strategy for improved involvement of, and collaboration with, users generally

Three mental health workers were appointed to support user involvement. They recruited 30 service users into planning teams. These teams developed a work programme and were trained as facilitators for user events, chairing meetings and recording the views of other service users.

The resulting report identified some key themes:

Users wished for a relationship with staff, but felt that they were treated with disrespect
Users felt powerless and were anxious that speaking out would jeopardise their care and treatment
Users lacked information about the system and treatments

The report was presented to purchasers at a conference. Outcomes included user involvement in staff selection and the setting up of a training co-operative for early input to staff training. User liaison posts were created.

The researchers found that:

Participating service users had little understanding of the system so a longer period of induction was needed than had been anticipated
Payment of users encouraged involvement, and helped overcome initial scepticism.
Payment encouraged a business-like approach (one user commented that it was 'like a job'), and users felt valued and valuable
Independent facilitation enabled the link to be formed and trust to develop between user and purchaser partners
Professional anxiety was reduced and there was a positive effect on the 'general culture'
Scepticism about genuineness and effectiveness was overcome

The researchers suggest that a project such as this, by allowing sufficient education/training and development' and time for trust to develop, overcame the experience of 'failure born of time limits'. They feel such failure is wrongly interpreted as a limitation of those involved and the incapacity of users to work in partnership.

References

National Service Framework for Mental Health Department of Health 1999 p46
The Impact of Mental Health User Involvement Research Policy and Planning (1997) vol15 No 2 p26-30
McIver S 1991 Obtaining the views of Users of Mental Health Services King's Fund Centre
Rose Diana et al 1998 In our Experience: User-Focused monitoring of Mental health Services in Kensington & Chelsea & Westminster Health Authority The Sainsbury Centre for Mental Health
National Service Framework for Mental Health p43
McIver S 1999 'So you think you know it all?' Health Service Journal vol 109 no 5672 16.9.99 p22-23
Morgan H 1998 'A Potential for Partnership: Consulting with users of mental health services' in Foster et al Eds Managing Mental Health in the Community: Chaos and Containment Routledge pp177-187

Other resources

Barnes Mort & Shardlow 1999 Unequal Partners - User Groups and Community Care The Policy Press Bristol
� Study which analyses the relationship of mental health and physical disability user groups to policy. Perceptions of user group and agency of their roles.

Bowl R 'Involving service users in mental health services' Journal of Mental Health vol 5 (3) July 1996 p287-303
� Report on two research studies

Carpenter J and Sbaraini S 1997 Choice, Information and Dignity- Involving users and carers in care management in mental health. The Policy Press Bristol, in association with the Joseph Rowntree Foundation and Community Care
� Report describing development and evaluation of a project designed to involve mental health service users at an individual level in the care management process.

Leader A & Crosby K 1998 Power Tools Pavillion
� "Looks at how advocacy services can develop practical models of good practice"

Leader A 1995 Direct Power Pavillion
� "Tool for social and health care professionals who need to support and empower clients preparing for care assessments, discharge and aftercare arrangements, and in redeveloping care plans which are relevant to clients' needs".

Getting Ready for User-Focused Monitoring A guide for Mental Health Service Providers, Users and Purchasers The Sainsbury Centre for Mental Health 1998
www.sainsburycentre.org.uk

Thompson K et al (Eds) 1997 Mental Health Service Development Skills Workbook The Sainsbury Centre for Mental Health

Firth & Kerfoot 1997 Voices in Partnership - involving users and carers in commissioning and delivering mental health services NHS Health Advisory Service Thematic Review The Stationary Office

'The Impact of Mental Health User Involvement' Research and Policy Planning vol 15 no.2 Social Services research Group 1997
� From 1997 workshop 'Citizens, Consumers or Users?'

East Yorkshire Monitoring Team 1997 Monitoring Our Services Ourselves
� Practical manual and audiotape for mental health user groups and service providers

Joseph Rowntree Foundation Findings series
� Evaluated initiatives e.g. Involving users and carers in the care programme approach in mental health www.jrf.org.uk

Mental Health Foundation website http://www.mentalhealth.org.uk/rsngui1.htmtransfer

Engaging with those who do not communicate conventionally

Policy guidelines state that every effort must be made to establish a service user's preferences, however challenging that may be. It is suggested that everyone can communicate what makes them happy or sad, and what feels good or causes pain.

One author suggests:

Establishing whether there is someone who is familiar with the person's way of communicating
Using this person to facilitate communication rather than as a substitute for communication
If the person uses a particular form of communication such as Makaton, enlist an interpreter
Consider whether observation might be a key way of establishing preferences¹

Communication can be made more effective if those who know the individual well assemble information about them, that is then available to others. This could include, for example, significant people and events, experience of expressing choice and preference, ways of communicating, behaviours that have communication value, unusual behaviours and appropriate responses.

Biala, a tool to systematically gather such information to enhance user participation, has been designed and evaluated in Australia.²

There are useful skills and experience to be shared across disciplines.

See Engaging with people who have a learning difficulty & Engaging with people with dementia & Johnson's review of studies on communication

References

Morris J 1997 Community care: working in partnership with service users Venture Press Birmingham
Shaddock A et al 1998 'Communicating with people with an intellectual disability in Guardianship Board hearings: an exploratory study' Journal of Intellectual and Developmental Disability vol23 no 4 p279-293

Other resources

Fitton Pat 1994 Listen To Me: Communicating the needs of people with profound intellectual and multiple disabilities Jessica Kingsley London
� Written by a parent for other parents. Describes the 'care book' illustrated with photos developed by the author to communicate to others her daughter Kathy's needs. This included a section describing the way in which Kathy communicated with sounds, facial expressions and body movements so that her pleasure, approval or disapproval could be recognised.