Black and minority ethnic older people's views on research findings
An exploration of how research can bring about change in the lives of black and minority ethnic older people.
This report asks what contribution research can make to transform the experiences of black and minority ethnic older people. Uniquely, it engages black and minority ethnic older people in informed discussion about research and how it can bring about change in their lived experiences.
The authors explore the value of mainstream or community services in effectively meeting the needs of these older people, including the impact of funding. They go on to consider the continuing problem of money in the lives of older people; continuity and change in family and community relationships; and the need to involve black and minority ethnic older people in planning and carrying out future research.
Consultations with groups of older people from black and minority ethnic communities found that older people often felt they had been "researched to death" over the past 15 years. The work by REU highlighted the need to move beyond traditional research issues and move into ways about bring change in practice. The study also drew on a literature review.
The literature review shows that:
- The numbers (and proportions) of older people from black and minority ethnic communities have risen rapidly, from 60,000 in 1981 to over 350,000 in 2001. Although the numbers have grown from being quite small, this is not a new area of research.
- The impact of ageing (in terms of health and support needs) happens at a comparatively younger age among many minority communities.
- Black and minority ethnic older people are more likely to face a greater level of poverty, live in poorer quality housing, and have poorer access to benefits and pensions than 'white' older people.
- Myths about minority ethnic communities need challenging: there is not necessarily an extended family which "looks after its own".
- Older people from different communities may share experiences of ageism and racism, but the circumstances of Chinese, Afro-Caribbean or Asian older people may require different approaches and solutions.
As well as endorsing many of these findings, the consultation groups raised the following issues:
- Access to majority services for black and minority ethnic older people remains problematic. Barriers include language issues, knowledge of what is available, and the attitudes and practices of service providers.
- Older people felt that community-based voluntary organisations were more likely to reflect their needs; such organisations are, however, the least financially secure.
- Older people said that they had been over-researched, with researchers often asking the same questions (or producing the same findings) as had been evident 15 years ago. They did not want yet more research for its own sake. They wanted action that would bring about change and to be involved in decisions that affected their own lives - locally and nationally.
The numbers of older people from black and minority ethnic communities have risen sharply over the past decades - and are projected to continue to rise. However, service responses to the needs of black older people have been poor. Often services have either failed to provide appropriate support within main services or have turned to community voluntary organisations to provide that support. However, the funding of community voluntary organisations is precarious at best. Older people have expressed frustration that the organisations with the money cannot provide appropriate services, and the organisations with a better track record in providing services often do not have the money to exist.
These issues were discussed by older people at the Joseph Rowntree Foundation's Older People's Steering Group. This group - with members from a range of majority and minority communities throughout the UK - defines the scope of the Foundation's Older People's Programme. The group was clear that the issues of black and minority ethnic older people were very important among the wider issues of older people more generally. They felt that it would be important to ask black and minority ethnic older people themselves about their experiences and what they felt were the priorities.
The REU undertook a number of consultations with black and minority ethnic older people in Leeds, Bristol and London. REU staff summarised the research to date about black older people; presented the findings to groups of 30 - 40 black older people in each of these consultations; and discussed the implications for future work. Consultations included people from different Asian, Afro-Caribbean, and Chinese groups.
Findings from existing studies
Key findings from existing studies about black and minority ethnic older people were:
- Both the numbers and proportions of older people from black and minority ethnic groups within the population are rising and will continue to rise for the foreseeable future. Numbers are expected to rise from 60,000 in 1981 to over 350,000 in 2001.
- The census also highlights there are equal numbers of men and women in this group.
- The impact of ageing (in terms of health and social care needs) happens at a comparatively younger age within many minority communities.
- There is evidence that black and minority ethnic older people are more likely to face a greater level of poverty and have lower incomes than white older people.
- The numbers of people over 85 from minority communities are also rising. Although people in this age group are more likely to use services, there is very little knowledge (or acknowledgement) of the issues that services need to address.
- Black and minority older people are more likely to live in poorer quality housing which lacks basic amenities, and this may affect their health.
- The idea that the extended family will look after their 'elders' may be a myth and certainly masks the level of true need. Often the reality is that family networks are spread across continents, not counties.
- There are common experiences across different communities, but no single approach will meet the needs of older people from all black and minority ethnic communities. The circumstances of Chinese older people may differ from those of Afro-Caribbean older people, for example. And, as with older people more generally, each person's circumstances may be different.
The views from the consultation groups
In the consultation groups, older people agreed that these findings reflected what was known about their own areas and experiences. There was some frustration that researchers wanted to do yet more research, rather than making a difference with what was already known. People said that many researchers were either trying to answer questions that had been answered years ago, or were looking at research that did not reflect the lives of older people.
Older people felt there was important work still to be done, but it was more about applying current research into practice. They identified a number of key issues.
Mainstream or community services?
There was a great deal of frustration that majority services did not meet the needs of different minority communities.
Language barriers in services
For some communities language barriers within services caused problems finding out what services were available or getting services to respond to the needs of different communities. For example, people often had problems explaining symptoms of ill health, and felt that busy GPs did not give sufficient time (or have interpreters in place) for consulting with patients whose first language wasn't English. As a result conditions could be misdiagnosed or diagnosis was very late. Often the problems were about information or advice - locally and nationally - on what to do or who to approach.
Culture, beliefs and values
Older people felt that majority services often did not meet the needs of culture and beliefs that are important to different minority communities. This might range from basics of food to a lack of knowledge and respect for religious beliefs and practices. Different communities often have a different view of health and well-being, and find that their own views of complementary medicine or a holistic approach to health needs are not seen as being important or relevant. There were real frustrations here: older people felt that the Western mindset simply saw communities as "problems" rather than respecting the fact that different communities had real strengths to be valued.
Who should provide services?
People's experience in different areas had been that the main services seldom provided what minority communities wanted. Community-based services were more likely to be accessible and to provide a better quality service. However, participants disagreed about what should be done next.
- Some had lost faith in mainstream services and wanted services from and by their own community voluntary groups. They felt the best routes to support (and their most positive experiences) had been when their own community voluntary organisations were adequately funded to undertake these tasks.
- Others felt that funding community voluntary organisations let the mainstream services "off the hook". They felt that the main services should be addressing these issues. They also felt that, when budgets cuts were on the table, community voluntary services were the first to lose out.
Some older people who had come to the UK during the 1950s and '60s and had worked in public services said that they had not been properly advised on the need for pensions. Because of this, they had found themselves in a poverty trap in later life. Had better advice been available they may have been able to secure better provision for their later years.
For some communities poverty was the central issue. Many felt that it was "their lot" to accept poverty, but did not want their children or grandchildren to be in the same position. Benefit entitlement was often poorly understood, not available in appropriate languages, or there was no one to explain what was available and how they might apply for it.
Relationships and well-being
Participants felt there were often inappropriate stereotypes about different communities "looking after their own". In fact, the discussions in the meetings highlighted that family members were often more likely to live further away - not closer - than might be true in Britain as a whole.
There were also issues about changing values between generations. There could be both a generational gap and a cultural gap between black and minority ethnic older and younger people. This could leave older people feeling particularly isolated - often literally, living alone.
Mental health was also an issue, in particular dementia and depression. Isolation sometimes led to high levels of depression and the need for more befriending services. While some participants said that depression and mental health could be a taboo subject in their communities, they felt there was a need to discuss these issues - but not in a way that left people feeling worried or exposed.
Participants also recognised and celebrated the strengths that could exist in their communities. The networks of support were greatly valued, and often older people felt that they had important things to say about a good, balanced, life worth living. However, most of the time they felt that they were being seen as a problem to be solved rather than as people with real strengths and wisdom to share.
Common needs for all older people
Participants did also face similar issues to older people more generally. These included:
- poor access to health care, including having to wait on trolleys in hospitals. A lack of follow-up from hospital to home was also seen as a problem;
- sustaining quality of life through preventive measures (healthy eating, good exercise, a good day out);
- the cost of housing and of living in London and other areas where housing was expensive;
- pensioner poverty, particularly acute among some minority communities, but also a concern for many older people;
- housing designed for older people that did not include space for friends or relatives to stay making it harder to maintain their social and family lives.
The important message that came from the discussion was that there was not one specific formula that cut across all groups. Older people from different minority communities often had specific needs and specific issues. To emphasise this point some suggested that the idea of a uniform "majority community" of older people is, itself, misleading. Older people are different from each other too.
However, it is also important to recognise the need to change mindsets as much as developing specific services.
The consultations with older people from black and minority ethnic communities have raised a number of issues which are relevant both to the Foundation's Older People's programme and to the wider situation nationally.
In particular there is a challenge to move beyond the traditional research agenda and to develop ideas in practice. At the same time there is a need to involve older people from black and minority ethnic communities in bring about this shift. This will require funders, services and policy-makers to develop their own approaches (in involving black and minority ethnic older people; in sharing the setting of agendas; of supporting the development of exemplars of good practice) to achieve these ends.
About the project
The project was based at the REU (Race Equality Unit). The project involved 3 key stages:
- An accessible review of research about older people from black and minority ethnic communities.
- Consultation in three different areas (Leeds, Bristol and London) with a total of over 100 older people from a range of different minority communities (African, Bangladeshi, Caribbean, Chinese, Indian and Pakistani).
- The setting up of a steering group of older people from different black and minority ethnic communities to define relevant priorities and activities for the JRF Older People's Programme.
Alex O'Neil, JRF Principal Research Manager with responsibility for the Older People's Programme, was also involved in writing the report.