Social Work Research Findings No. 36Support for Majority and Minority Ethnic Groups at Home - Older People's Perspectives
Alison Bowes and Charlotte MacDonald
This study compares needs and service provision from the perspectives of older people drawn from majority and minority ethnic populations in Glasgow and Edinburgh. The minority ethnic group were people of South Asian origin. The results of two studies provide insight into differences and similarities in relation to knowledge about services, access to services, experience of health care, and informal networks of support.
- The support needs of the two groups were very similar, although the sex and age profiles of the study samples differed.
- Use of services differed markedly between the two groups. Twenty-seven per cent of the majority group said they received help from home helps or home carers compared with seven per cent of the South Asian sample.
- Community based 'multi-cultural' day centres were the main source of non-family support for the South Asian people. There was little evidence that such day centres helped users to have access to mainstream services. It emerged that providers felt that mainstream services were completely inappropriate for South Asian people because of cultural differences.
- The majority ethnic group had more knowledge of services generally than the South Asians and easier initial access to social services, although access to the support that was needed was frequently limited by eligibility criteria, cuts and waiting lists.
- The two groups expressed differing expectations and experience of the health service. The majority ethnic group made greater use of services such as optician and chiropodist than the South Asians. As in-patients, a number of the South Asian group had to have all of their food provided by family members as the hospital did not cater for their dietary needs.
- Services need to be responsive to individual needs in order to uncover the 'hidden' needs of older people who depend entirely on their families for support.
This report presents a comparative analysis of the views of older people from different ethnic groups in central Scotland. Two separate studies provide the basis for the comparison. These studies investigated older people's perceptions of their needs and the availability of support at home. The first study, (MacDonald 1999) was based on a sample drawn from the majority ethnic population. The second study was of South Asian older people (Bowes and Dar forthcoming). Details of both studies are presented at the end of this report.
Similarities and differences between the majority ethnic group and the South Asian group are explored and the implications for policy and practice in the provision of community care for older people are discussed.
Research which explores 'user perspectives' inevitably involves questioning service-led notions of need. Whilst service users may remain sceptical about the degree of influence their views have on service provision (Myers and MacDonald 1996), consultation with users is an important feature of community care guidance, reinforced by recent formal inspections. The report of a recent inspection by the Department of Health Social Services Inspectorate (1998) emphasised the need for full consultation with minority communities and the assessment of their specific needs.
The age profiles of the samples in the two studies differed, reflecting differing proportions of people in the oldest age groups. The majority ethnic sample included only people aged 75 and over, whereas the South Asian sample ranged in age from 52-99. These age limits were chosen for practical reasons related to the individual studies. The majority sample was designed to ensure representation of people with significant need. The South Asian sample design ensured identification of a sufficient number of older people in a very small population.
South Asians in Scotland
'Ethnic minorities' accounted for 1.25 per cent of the population in Scotland in the 1991 census. South Asians are by far the largest minority category in Scotland and make up 52 per cent of the minority ethnic population. Historically the initial areas of settlement of South Asian migrants were in the inner cities, and although there has since been a gradual movement outwards into more suburban areas, most still live in these inner city areas.
Earlier work has demonstrated that South Asian communities in Scotland are relatively less affluent than the majority ethnic population (Bailey, Bowes and Sim 1997). Households tend to be larger with more of them containing children and extended families. The South Asian population has a higher proportion of children and people of working age than the majority ethnic population, and the proportion of older people is smaller. In the older age groups, men outnumber women.
For South Asian people, owner-occupation is not necessarily an indicator of affluence. They are most likely to be owner-occupiers of poorer quality housing, which may lack amenity and be overcrowded. This pattern of owner-occupation is characteristic of South Asians in the UK generally.
The two study samples were typical of the populations from which they were drawn with respect to sex, household composition and housing tenure. The South Asian sample included a higher proportion of males than the majority ethnic sample. The average age of the majority ethnic group was 80 years 6 months and for the South Asian group, 65 years 2 months.
There was a marked difference in household formation between the two samples. Twenty per cent of the South Asians lived alone compared with 54 per cent of the majority ethnic sample. Indian people were slightly more likely to live alone than Pakistanis or Bangladeshis. More detailed information gathered in the South Asian study showed that 60 per cent were living in households which included more than one generation.
Patterns of housing tenure were as expected for South Asians in Scotland, with a high proportion (85 per cent) living in owner-occupied housing. The majority ethnic sample was evenly divided between owner-occupied and rented housing.
Indicators of need
The incidence of limiting illness was similar in both samples despite chronological age differences. This similarity gives us confidence when comparing results on service use from the two studies.
Health and Mobility by Ethnic Group
S Asian %
Illness/disability reported as limiting
Not able to go out without help
Not able to walk around house without help
number in sample
There were also similarities in the kinds of activities people said they needed help with, although cultural differences and differences in the availability of family help limited the scope for comparison. In the South Asian households visited, for example, food preparation was not a task expected of many of the older people (especially men), and this area of questioning proved unhelpful in ascertaining need.
Nineteen percent of South Asian people said they needed help with washing and dressing and 13 per cent with using the toilet. These were higher levels than for the majority ethnic group in which 10 per cent reported needing help with washing and dressing and 3 per cent with using the toilet. It was not clear however that these higher levels of expressed need arose from greater difficulties with the activities concerned. Another explanation could lie with differences in household type between the samples: respondents might be more likely to say they 'needed' help when help was readily available within the household.
People in both studies gave examples of similar kinds of household tasks with which they needed help. These tasks included changing curtains, cleaning, laundry and shopping.
Indicators of help provided
The vast majority in both groups said they had a friend or relative they relied on for help: 93 per cent of the South Asian sample and 82 per cent of the majority ethnic group.
The proportion saying they received help from their GP was the same for both samples. Receiving help from community nurses or health visitors was less common in the South Asian sample.
Widely different use of social services was evident from the comparison of the two samples. Use of the home help/care service was much more common in the majority sample. Over a quarter said they received help from this source compared with only 7 per cent of the South Asian sample. For use of day care services, the position of the two groups is reversed. When use of lunch clubs and day centres are combined to take account of overlap in these types of provision, the percentages using either facility are: 9 per cent for the majority ethnic sample and 58 per cent for the South Asian sample.
In summary, although the two samples differed in their age and sex profiles, they were similar in terms of the level of limiting illness and mobility problems reported. There were also similarities in the kinds of activities people said they needed help with although cultural differences and differences in the availability of family help limited the scope for comparison. The survey results highlighted the very different use made of social services in the two groups with much lower uptake of home care and much greater use of day care facilities in the South Asian group than in the majority ethnic group. The qualitative analysis of in depth interviews allowed these differences to be explored.
Four key issues emerged from the in depth interviews with 79 from the majority ethnic and 30 from the South Asian samples. These issues were knowledge about services, access to services, experience of health care and informal networks of support. In comparing these results it was apparent that variation within samples was sometimes as important as differences between them.
Knowledge about services
Among the South Asian respondents to the follow-up interviews, 20 stated explicitly that they lacked knowledge of services, especially services available to offer help and support at home. Yet 19 of them were attending a lunch club and/or a day centre, 3 were receiving home care and 1, meals on wheels. Ten were in the process of seeking social rented housing, and 1 already occupied a housing association property.
When respondents were asked where they had found out about services, they mentioned word of mouth and the community based groups - sources of knowledge which provided information in their own languages. In expressing their lack of knowledge of services, they did not apparently include the day centres as important service providers. This may reflect the community based nature of the centres, and their role as meeting places.
Knowledge of potential sources of financial support was particularly low among the South Asian respondents. Incomes generally were low, and 11 of the 30 participants appeared to have no income of their own. For such people, the financial security offered by family support was significant. Four were receiving welfare benefits of some kind. Their accounts of these were very unclear and they were unable to explain what the benefits were or where they came from. Only one had heard of Attendance Allowance, but was not planning to apply for it. Finances were seen as a private matter, to be kept within the family, and there was resistance to seeking support from elsewhere.
Most people in the majority ethnic group were able to say to whom they would go for information about services in general and in 9 of these cases it was a relative, friend or neighbour. Social work staff or offices were cited in 17 of the 79 interviews; GP or nurse in 15, a warden or caretaker in 3 and advice centres in 3 interviews. Participants were more aware than the South Asians in a general way about the availability of social services, such as home care and aids and adaptations for daily living. However, little was known about the role of the social work department itself or how to contact it.
People with wider social networks were better informed about services. In the majority ethnic sample almost half of the men and a third of the women talked about maintaining a wide range of contacts with family members, old friends, church and other organisations. Some people felt themselves to be cut off from information about services and other help through not being part of an 'in group' - referring to sheltered housing residents, day centre members or lunch clubs. The experience of paid work was also a source of knowledge. Jobs which participants had held ranged from professional and managerial to unskilled and casual work. This experience had brought varying degrees of familiarity with the workings of local government and the benefits system.
Most of the majority ethnic group were in control of their own finances and were familiar with the benefits system. However about a third of participants were wholly ignorant of, or misinformed about, the Attendance Allowance.
Limited knowledge about sources of support was associated in both studies with restricted social networks. This was a particular issue for the South Asian sample. They did not appear to regard the community based centres which most of them used as important sources of information about social services.
Access to support
Lack of knowledge was only one factor limiting people's access to support. Many expressed the view that what was available did not fit well with their own perceptions of their needs. For example, the home care service did not cover certain tasks, or did not operate in an acceptable fashion; people with family help were not eligible for certain services, apparently regardless of the pressure on the family.
These kinds of issues arose in both studies. However, in the South Asian study it emerged that some of the community groups, as well as representatives of the social work department, felt that mainstream services were completely inappropriate for South Asian people because of their failure to address cultural differences. The policy focus on specialist provision for South Asian older people also reflected this perception.
The survey results reported earlier showed higher attendance at day centres amongst the South Asians compared with the majority ethnic group. There was also evidence of differences in the nature of the day care enjoyed by people in the two ethnic groups. The terms day centre and lunch club cover a range of facilities from purpose built day care centres to local, voluntarily run groups meeting in church or community buildings. Their common features are that they provide social contact, company and food. The day care which people in the South Asian sample experienced was, without exception, community based, 'multi-cultural' day care based in community buildings. The majority ethnic sample, however, included people using purpose built day care centres run by the social work department or voluntary organisations specialising in the care of people with dementia and other limiting illnesses.
South Asian respondents who wanted to use services quite clearly preferred the specialist services linked with community life. Other mainstream services were seen as having nothing to offer older South Asian people. Respondents who used the day centres sought the good company of others, which they could enjoy using their own languages. Some of those who did not use the day centres explained this by saying that they preferred to be with their families, and to be private. Critical views were expressed about 'gossip' at the day centres.
For South Asian respondents, the main sources of service support were clearly the community based groups. Recruitment to the groups appeared to rely on community networks, as well as on outreach work by the groups themselves. They were strongly community based, several of them having originated in grassroots initiatives, only later becoming linked with local authority provision. In this respect, they were markedly different from the statutory services. As key providers of services to South Asian older people, the community groups also had the potential to link people to other services, or to obstruct such links. The evidence from this study is that they did not act effectively as a gateway to mainstream services.
In the majority ethnic group, where greater knowledge and access to social services was evident, problems with services arose further down the line. In a number of examples people said they had been denied services because of cuts, waiting lists or ineligibility. Access to a service often required an effort on the part of the older person or a relative:
"They don't contact me, I contact them. Maybe they think I don't need anything. I think it's because of all the shortages."
Nor did having access to services guarantee that needs were met. People who had come to rely on services (including sheltered housing wardens and bath nurses) for specific types of support described their anxiety when such support was withdrawn. There was also some evidence that people of lower socio-economic status, and those with chronic conditions, were more likely to have unmet needs for help with bathing than those with the ability to purchase bath aids or personal care independently, or who had acute medical conditions.
Preference also contributed to the level of service use in the majority ethnic sample. Two people rejected a bath nurse service because it was seen as too perfunctory. One woman preferred to live housebound on an upper floor because she did not believe that formal services could substitute for the personal care which her neighbour provided should she move to a more suitable house. Personal preference - for a relative rather than a 'stranger' to provide help, or to remain at home alone rather than join in activities for 'old people' - was also a factor which influenced take-up of available support.
Experiences of health care
The accessibility and universality of primary care services gives them a central role in supporting older people. The survey results presented earlier illustrated the importance of GP services with about half of respondents citing their GP as a source of help. However there were clear differences in how people viewed their GP and the kind of help they received.
Nearly all the South Asian respondents to the in depth interview were regularly visiting their GPs and reported significant continuing health problems. They appeared to be satisfied with their GPs. They tended to attribute persistent health problems to 'old age', and to expect them not to be resolved.
Several South Asian respondents had uncorrected sensory impairments, affecting sight or hearing, and had apparently not received help from GPs or elsewhere in having these investigated. Respondents were not aware of referrals to social work being made on their behalf by their GPs, and only one respondent said that they had learned about social services when in hospital.
The families of South Asian respondents contributed to health care in important ways. Eleven respondents had been in hospital within the past year, 4 of whom explained that during the hospital stay, the family had been involved in their care. In 3 cases this included, the provision of all of their food. One had received nursing care on discharge, and another had received care from a day centre. The others had simply returned to their families for care, apart from a woman who, having no family, had stayed in her own house, visited occasionally by a neighbour.
The majority ethnic group looked to the primary health care service for monitoring their health and well-being, regular prescribing, advice about non-medical matters and 'arranging' social services. Amongst the third of the group who expressed unsolicited praise for their GPs there were several who described regular or ad hoc visits from their GP:
"Sometimes he takes it upon himself to call in and see how we are."
Criticisms of the service were voiced by 12 of the 79 in the majority ethnic group, some of whom felt quite strongly that their GP did not take them seriously. Illustrating this view, one woman said her GP had described her as a 'moaner'. Being told they were 'too old', being prescribed pain killers, when in the participant's view an investigation was needed, were other instances. For these people the GP was not someone they felt they would turn to for advice or information. Others talked about the difficulty of getting appointments with their 'own GP' - someone who had known them for many years - and about unwillingness of practice administrators to arrange home visits.
For most of the majority ethnic sample the GP was perceived to be the 'gatekeeper' for social and health care services. This worked well for many who felt supported by the GP and had been referred for services. Others had simply been told that they would not be eligible for help from social services and information about other sources of help had apparently not been given. Others again, who for one reason or another avoided contact with their GP, seemed to be effectively cut off from other services.
Unlike the South Asian group, there were no references from the majority ethnic group to family members having to provide them with support when in hospital. However, amongst the generally appreciative views of hospital treatment there were 6 accounts of severe illness caused, in the participants' views, by incorrect medical interventions. A large proportion of the majority group had regular sight and hearing tests and unmet needs were rarely described in this area. The chiropody service was used by most of the participants and highly valued but many said that appointments were too far apart.
In summary, South Asians appeared to have low expectations of health care professionals. Respondents accepted their problems (despite commonly being worried about their health), and were uncomplaining about what, to others, might be seen as service deficiencies. The majority group were more likely to expect a positive outcome from, and to express a judgement of, their GP's performance than the South Asian group. Most noticeably, most of them saw the GP as holding the key to other services and they could support this view from their personal experience. They also had more knowledge and experience of other services such as optician and chiropody than the South Asian people.
Informal networks of support
Informal support was available to most people from the family, regardless of ethnic group. There is debate in the research literature about the extent to which South Asian family structures in the UK may be changing (Ahmad 1996), but the values attached to kinship and the resulting behaviours continued to be strong among this group of respondents. An important consequence of this was the potential for someone without a family to be extremely isolated, and to lack alternative networks of informal support. It was apparent that alternatives to the family were not valued highly and were difficult for a lone South Asian person to establish.
Support within South Asian families was intra- and inter-generational, frequently within the same household, or else very nearby. It covered the full range of potential types of care and included housing provision and complete financial support. In most cases, it was clear that the older person was very much part of the family, and had a full role within it, despite disengagement from financial responsibility and, in some cases from family decision-making.
The specialist community groups provided a further source of informal support and reflected wider South Asian values. For example, where groups were strongly Muslim, men and women gathered in separate rooms, or on either side of a screen. Such an arrangement was natural for people, and they enjoyed relaxed company with one another.
Only one of the 79 interviewed in the majority ethnic group lived in an extended family whereas this was common amongst the South Asians. However in terms of the support provided this difference may be less significant than at first appears. One third of participants in the majority ethnic group were very dependent on daily support from a caring relative they lived with, or else one who visited. Many of the remaining two thirds received support of some kind from a younger relative, the level of support depending on where the relative lived, their access to a car and the demands of a job and family.
Financial exchanges within the family took different forms: where some of the majority group spoke of reimbursing or rewarding family members financially for looking after them, the South Asians were more likely to pool their income with that of their extended family.
One clear difference which emerged was the wide range of long standing, non-family connections which many people in the majority ethnic group could draw on for support. Reciprocal relationships of long standing with neighbours and friends were often the basis on which services such as visits, running errands and holding a house key were provided. Often people who had been churchgoers received regular visits and other social support from their church community. Lack of such connections was associated with a greater degree of social isolation and greater need for support from social services in the majority ethnic group.
Although many South Asians also had support from a religious community their range of contacts was in general more limited. This meant greater reliance on the family and community groups for South Asians compared with the majority ethnic group.
Implications for policy and practice
- The findings suggest that, irrespective of ethnic group, chronological age is not a good predictor of needs for support at home. This has implications for the indicators used in assessing need for support across communities.
- Similarities between the needs of different ethnic groups and variation within these groups challenge the practice of catering for the needs of minority ethnic groups through separate social services.
- Respondents' perceptions of their needs offer a basis for developing a genuinely 'person-centred' approach to assessment and service provision, one which takes account of differing values and expectations.
- The findings confirm the valuable role of community based groups in meeting social needs. However the lack of access to mainstream services for South Asian people suggests that these groups are not effective in linking South Asian people to formal networks of support.
- The findings highlight the potential for primary health care services to monitor the well being of older people and facilitate access to other services. This role appears to be more effective in relation to the majority ethnic population than to South Asians. This finding underlines the importance of joint initiatives on the part of health and social services to open up mainstream services to minority ethnic groups.
About the research
This comparative analysis was conducted jointly by the Department of Applied Social Science at Stirling University and the Scottish Executive Central Research Unit. It was funded by the Scottish Executive.
The analysis is based on results from two separate studies. The study involving the majority ethnic sample was undertaken by Charlotte MacDonald as part of a programme of research on the role of social work in social inclusion. This programme is core funded at the Social Work Research Centre, University of Stirling by the Scottish Executive. The study was conducted in 1996-98 and was based on random samples of people aged 75+ selected from GP lists. A response rate of 65 per cent gave a representative sample of 1022. This did not include any black or Asian people. Seventy nine respondents who indicated they needed support were interviewed in depth.
The second study was designed as a 'parallel study' to the first one and was conducted in 1997-1999. A sample of 102 South Asian older people was drawn in part from GP lists and in part through contact with multi-cultural day centres. In depth interviews were conducted with 30 respondents.
For the South Asian sample the cut off age was 60 because of the very small number of South Asian older people in the population. Some people who were in their fifties were also included because they were using community facilities designed for older people, they considered themselves to be 'elders' and this had been recognised by the providers and their funding organisations. The sample included 40 people from India, 50 from Pakistan and 12 from Bangladesh. Sampling quotas were used to ensure reasonable representation of each group in the sample.
A two stage method of investigation was used in both studies. Firstly, a short, structured questionnaire was administered. This established the age, sex and living arrangements of respondents, their state of health, whether they needed help with a standard set of activities of daily living, and the services they used. For the majority ethnic sample, the first stage took the form of a postal survey. For the South Asian sample, interviews conducted in the participants' first languages were used for this stage.
Secondly, once data from the first stage had been analysed, sub-samples of respondents were selected for in depth interview. These included people who had indicated willingness to be interviewed and who appeared to have support needs. The interviews were semi-structured in style and designed to gather information about any aspects of the individual's life where help was needed. The interviewer would elicit information about who provided support, needs which were unmet, contact with social and health services and knowledge about what services were available.
The analysis of quantitative data was completed using SPSS. Qualitative data were analysed thematically. In interpreting and comparing data, we have as far as possible taken account of potential differences of meaning and understanding resulting from language differences.
Ahmad W I U (1996) 'Family obligations and social change among Asian communities' in Ahmad W I U and Atkin K (eds) 'Race' and Community Care Buckingham: Open University Press pp51-72
Bailey N, Bowes A M and Sim D F (1997) 'The demography of minority ethnic groups in Scotland' in Bowes A M and Sim D F Perspectives on Welfare: the Experience of Minority Ethnic Groups in Scotland Aldershot: Ashgate pp16-34
Department of Health Social Services Inspectorate (1998) ' "They Look After Their Own, Don't They?" Inspection of Community Care Services for Black and Ethnic Minority Older People': London, Department of Health.
MacDonald C (1999)'Support at Home - Views of older people about their needs and access to services': The Stationery Office, Edinburgh.
Myers F and MacDonald C (1996) '"I was Given Options not Choices". Involving Older Users and Carers in Assessment and Care Planning'. In R Bland (Ed) Developing Services for Older People and Their Families. Research Highlights in Social Work 29. London: Jessica Kingsley Publishers.
The study of the majority ethnic group is published as: 'Support at Home: Views of Older People about their Needs and Access to Services' by Charlotte MacDonald, published by The Stationery Office (price £14 per copy). Available from The Stationery Office Ltd, Mail Order Department, 71 Lothian Road, Edinburgh, EH3 9AZ. Telephone: 0131-228 4181 or Fax 0131-662-7017. A summary is also available - Research Findings no. 35 in the CRU series.
The study of South Asian older people was commissioned by the Scottish Executive and conducted by Alison Bowes and Naira Dar, Department of Applied Social Science, University of Stirling. It is called 'Perceptions of Need and Availability of Support at Home - A Study of South Asian Older People' and will be published in 2000.
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