This study provides a unique insight into the active involvement of Chinese older people in research and the promotion of their quality of life through collective actions.
This action-orientated and participant-focused project aimed to support Chinese older people to develop a collective voice, influence policy and practice and reflect on their experiences. Three local working groups, in South Yorkshire, Manchester and London, adopted a different strategy to influence an area of services.
The report:
- includes participants’ original ideas, first-hand experiences and personal reflections
- shares their hopes and frustrations
- discusses the barriers to getting involved.
The study shows the development of effective measures for user involvement, an integral requirement for most social policies, and focuses on the process of involvement as well as the actual outcomes. The appendix ‘Shared Expectations, Shared Commitments – a Joint Statement of Chinese Older People’ reflects the expectations of 207 Chinese older people from eight cities and includes practical suggestions put forward by them.
Summary
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This study, by a research team from the University of Sheffield, was an action-orientated and participant-focused project that aimed to enable Chinese older people to influence policy and practice. It also allowed them to reflect on their experiences of involvement. The study found that:
- Participants had diverse experiences of involvement, both in their own community and in the wider society. Many took part in voluntary work, voted in local and general elections, served as members of management committees in Chinese organisations and attended consultation events organised by local authorities.
- Those who took part shared common issues about getting involved, including the language barrier, lack of support, lack of leadership and limited level of involvement.
- There were positives and negatives about getting involved. Participants gained a sense of achievement and an increase in self-confidence, friendship and respect. Sometimes, their involvement brought about practical changes in services and improvement in the lives of Chinese older people. However, they also invested a lot of time, money and energy and involvement could also bring stress and anxiety.
- There was a mix of personal reasons and social reasons for Chinese older people to get involved. Some participants said they wanted to combat their own or others’ social isolation, and to develop services which could benefit themselves and later generations. Others took part because of invitations from friends or the feeling of being respected and valued.
- Participants drew up a statement of shared expectations on growing old. This covered provision of Chinese community centres, medical and health services, emergency support, appropriate care, suitable housing, social contacts, lifelong learning and citizen rights.
Background
This study builds on two previous projects. The first was 'The Caring Needs of Chinese Older People' (1997-99), which concluded that many Chinese older people were, to various extents, socially excluded from both their community and the wider society. Their needs were not fully recognised and access to services was partially denied. The second project was 'Shared Expectations, Shared Commitments – National Conference on Chinese Older People' (2001), in which participants reiterated their concerns over various service areas and demanded a greater voice in society. The primary intention of this project was to work with Chinese older people to build upon the outcomes of previous work.
The project provided Chinese older people with the support to develop a collective voice. 207 Chinese older people from eight cities were involved in 16 discussion groups to formulate a joint statement. The statement contains ten common expectations and suggestions in different areas of policy and practice.
The project team worked with Chinese older people to influence local practices or specific policy areas. Three local groups were set up in South Yorkshire, Manchester and London. To achieve the aims, group members took up different roles, including those of service provider, working partner of service providers and researcher. The project also allowed participants to reflect on their experiences of involvement and to share their views through publication, oral presentation and direct dialogue with service providers.
Shared expectations
In the discussion groups, participants were asked about their expectations of growing old in Britain. After repeated discussion and modifications, the following ten statements represent the consensus among them. To ensure the list accurately contained their common expectations, participants were invited to a national meeting at which the list was endorsed.
- Chinese older people should be provided with a wide range of services through Chinese centres.
- They should have access to effective medical and health services.
- Chinese older people should also be given appropriate support in order to deal with emergencies or special situations.
- Chinese older people in need should be provided with appropriate care.
- Sufficient and suitable housing services should be available for Chinese older people.
- Multiple channels should be in place to enable Chinese older people to maintain social contacts.
- Support services should be provided to reduce the caring and emotional burdens of older Chinese carers.
- Chinese older people should have the opportunity to pursue lifelong learning.
- All services for Chinese older people should be provided in accordance with their cultural, language and individual circumstances.
- Chinese older people should not be discriminated against and should enjoy all the rights of citizens.
Older people as a service provider
The South Yorkshire group was recruited from the members and ex-members of the management committee in a Chinese older people's club, which had its own venue and paid staff. To some extent they had control over resources and power to make decisions.
In the past, we were just passive service users. But since 1997 we have voluntarily come together to serve other older Chinese and become service providers.
(Booklet by South Yorkshire Chinese Older People)
Older people working in partnership
This group is our responsibility.
It is because we have spent time on research and we have all tried out our suggestions.
(Focus group discussion, Manchester Working Group)
Older people as researchers
Members of the London group were all carers or ex-carers. They shared similar experiences and emotions in providing care for loved ones who were disabled or ill. Their empathy with each other was the main driving force for them to be involved.
To let all carers know that they are not alone. Many other people are suffering from similar hardship. Our voice needs to be heard. This would make the government know about what kind of help would be useful.
(Focus group discussion, London Working Group)
The barriers
The language barrier is still a main hindrance to getting Chinese older people involved. As reported by the members of the South Yorkshire group, the lack of a common language with the wider society has generated difficulties in getting information, communicating with non-Chinese organisations and applying for funding (booklet by the South Yorkshire Working Group). Moreover, English-speaking communities are still rather insensitive to the disabling effects resulting from a lack of language support. When recalling the experience of attending a national event concerning older people from ethnic minority communities, the London Working Group said there were no interpreting facilities. Worse still, they received unfriendly looks and cries of "Sh! Sh!" from other participants when the more English-literate members tried to help the rest to understand the discussion (focus group discussion, London Working Group).
Due to the language barrier many Chinese older people have to rely on 'link' people to communicate with the wider society. These could be active volunteers, employees of Chinese organisations and Chinese-speaking workers in non-Chinese organisations. Feelings towards these link people are mixed and the relationship is not clear-cut. When describing their relationship with the workers in Chinese organisations, many older people referred to them as staff members and sometimes as their leaders. When recalling the unhappy working relationship with an ex-link person, the South Yorkshire group said:
Feeling frustrated and unfair but unable to air grievances when we come across helpers who are not trustworthy. Sometime we feel like 'a dumb person eating huanglin'.
(Huanglin is a fruit which looks nice but with a very bitter taste. This traditional saying implies that only the person who is suffering could understand the feeling.)
(Booklet by the South Yorkshire Working Group)
The gains
For Chinese older people, there are gains from getting involved. Some are intangible whilst some bring practical effects. Some are personal gains and some benefit other Chinese older people. The local group members in Manchester were particularly excited by their achievements:
The documents and literature produced by the group, everything, I am not joking, are of very high standard … are presentable.
(Focus group discussion, Manchester Working Group)
The losses
But some people said I could earn money from doing this. I have been very angry in the last two years. I am giving up helping other older people.
(Focus group discussion, Birmingham Reference Group)
We were all very simple-minded before. This might be human nature. When it involves money, people start to think differently … We put our trust in someone and in return made ourselves targets of bullying.
(Focus group discussion, South Yorkshire Working Group)
Reasons for getting involved and carrying on
There are many reasons for Chinese older people to get involved. Some are more personal, such as keeping themselves active, gaining information and seeing friends. Some relate to their aspirations of combating social isolation, promoting mutual support and bringing benefits to themselves and later generations.
We are in the same generation. Life could be quite empty. It is not easy to join the social circle of the English people. We think we should get together … to solve problems when they arise, to organise some entertainment … to talk about our children, our family … it is better than sitting at home.
(Focus groupdiscussion, South Yorkshire Working Group)
Everyone will get old. We organise this place now and hope that the younger generations could inherit this. It is like digging a well for them. They don't have to do it in the future.
(Focus group discussion, South Yorkshire Working Group)
Conclusions
This study allowed Chinese older people a voice, to influence policy and practice relating to their lives. The project found that:
- Chinese older people had been involved in many different ways – from offering help to their neighbours in daily matters to organising services for other Chinese older people. They played a proactive role and had the ability to be involved and to perform different tasks.
- Their involvement often was a rational choice. Sometimes it was for their benefit and sometimes in the interest of the community.
- Getting involved was not always easy. Many had to face the language barrier, misunderstanding by fellow Chinese people, and complex funding and management issues. Some persisted in the face of these difficulties but others withdrew temporarily or permanently when they felt overloaded.
- Many Chinese older people were happy to contribute and had the potential to achieve. Most participants in the project found support and equal partnership important when working with the project team and service providers. Some expressed interest in taking part in similar projects in the future.
About the project
This was a two-year project (2003-2005), composed of three main parts. The first was the formulation of Shared Expectations, Shared Commitments – a joint statement of Chinese older people. 207 Chinese older people from eight cities were invited through local service providers and Chinese organisations to take part in 16 group discussions to formulate a joint statement.
The second part was the establishment of three local working groups with the assistance of the Wai Yin Chinese Women Society, the Chinese National Healthy Living Centre and an anonymous older people’s club. Each adopted a different strategy to influence an area of services of their choice. The South Yorkshire group was composed of six Chinese older people. Their aim was to seek resources to set up a home care project for frail Chinese older people. The Manchester group had ten members who concentrated on the opportunities for and delivery of lifelong learning for Chinese older people. The London group consisted of seven older people who were interested in the policy for carers.
The research team worked closely with these groups for about a year and provided them with various types of support. Through surveys, home visits, data analysis, direct dialogue with service providers, drafting a code of practice and conducting pilot services, these groups in general achieved their goals. Each has published a booklet to report their work and share their experiences.
The final part was the exploration of older people’s views on involvement and their evaluation of the effectiveness of the methods applied in this project. Nine focus groups were organised at different stages of the project, with either the local working groups or older people who had been actively involved in the process, to fulfil this purpose. In addition, a questionnaire was used to collect personal characteristics and information about experiences of involvement from those involved in the formulation of the joint statement.