Select annotated bibliography Black, Asian and Minority Ethnic older people and social care

Our researcher Anna Killick has prepared an annotated bibliography of resources that highlight the problems and issues faced by BAME older people accessing and using social care services in the UK. As our research in this area expands, we plan to add more resources to this website. Please get in touch via this contact form should you have any suggestions for essential readings in thia area.

Introduction

The proportion of the elderly who are Black, Asian and Minority Ethnic (BAME) is rising as those who came to the UK in the 1960s and 1970s reach post retirement age. The Centre for Policy on Ageing (CPA) estimates there may be 1.3 million BAME people over 65 by 2026 (Lievesley 2013).

We have to rely on censuses for the most accurate breakdowns of populations according to ethnicity, which the annual ONS estimates do not provide (Age UK 2019). The next census will take place in 2021.

Currently BAME communities are more economically deprived than white ones (Lipman 2014), affecting health, housing and pensions, which suggests they require state funded social care to a greater extent. Yet they report greater barriers to accessing social care and dissatisfaction with social care once accessed. Given this problem, and the increasing numbers of BAME older people, we would expect research into problems facing them and their carers to be extensive. This annotated bibliography highlights how in practice there is a ‘dearth’ of research, to use Greenwood et al.’s (2015: 73) description.

Nevertheless, some excellent studies exist. We review the key studies from the last ten years. Because social care in the United Kingdom is devolved, we focus on those which relate to England.

We organise the studies under three headings:

  • problems of BAME older people,
  • problems of those caring for older BAME relatives,
  • and quality of state and voluntary sector support.

Sources under each heading are listed alphabetically by author. Secondary sources referred to are listed at the end.

An excellent, more comprehensive list of studies is the Centre for Policy on Ageing’s Selected Readings, Older People from Black and minority ethnic groups, July 2019 [online] Accessed 20 September 2019. [http://www.cpa.org.uk/information/readings/black_and_minority_ethnic_groups.pdf ].

Literature on problems of BAME older people

Bailey, C., Sattar, Z., and Akhtar, P. (2018). ‘Older south Asian women sharing their perceptions of health and social care services and support: A participatory inquiry.’ Wiley Health Science Reports. Accessed 7 October 2019. [https://onlinelibrary.wiley.com/doi/full/10.1002/hsr2.55]

Methods:

  • Qualitative collaborative participatory enquiry with 15 elderly south Asian women in the North-East of England originally from India, Pakistan and Bangladesh, all still living with their families. Three workshops were conducted on the themes of health and well-being, home and housing, services and support.

Findings:

  • What they really need is a “little bit of help” in the family home that is affordable, culturally appropriate, and on their terms.
  • They had concerns about mainstream services’ cultural or religious appropriateness and language barriers. Some explanations for hospital medication were not given clearly. They did not always want to take a family member to GP appointments. Some lacked access to translation services.
  • One theme was ‘we don’t want to rely on family’. Most said they wanted to stay in their own home where they have friends and neighbours. Some are ‘scattered’ with younger family members. Some of them are lonely when they are out at work. To reduce ‘being a burden’ they want accessible public transport and somewhere social to go such as exercise classes and outings.
  • The local voluntary sector BAME Women’s Centre played a critical role in brokering with statutory support services, which has implications for how health and social care services should work with South Asian older women ‘to promote and maintain meaningful independence and on their terms’.
  • The authors cite Bradford based studies across ethnic groups, which find rather than the whole extended family offering care, it is likely that “caring” may still be viewed as the responsibility of the lead female in a household.

Care Quality Commission (2016) ‘People from Black and Ethnic Minority communities A different ending: addressing inequalities in end of life care.’ Care Quality Commission. Accessed 20 September 2019. [https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_BAME_FINAL_2.pdf]

This report sets out the particular problems facing BAME older people for end of life care

Jutlla, K. (2015). ‘The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton, UK.’ Ageing and Society, vol 35, no 5, May 2015, pp 1032-1054. Accessed 7 October 2019. [https://www.cambridge.org/core/journals/ageing-and-society/article/impact-of-migration-experiences-and-migration-identities-on-the-experiences-of-services-and-caring-for-a-family-member-with-dementia-for-sikhs-living-in-wolverhampton-uk/0BB760F86975C0C9B548DC35902D74AC]

Methods:

  • Qualitative research carried out with members of the Sikh community caring for a person with dementia, in Wolverhampton in the West Midlands. The research sought to provide an in-depth understanding of the experiences of Sikhs caring for their family member with dementia using narrative interviews. The Centre for Policy on Ageing web-site gives details for many similar health based studies which focus on caring for BAME with particular conditions, such as dementia, stroke recovery or diabetes.

Findings:

  • The findings highlight that migration experiences and migration identities are important for understanding participants’ experiences of services and experiences of caring for a family member with dementia. Person-centred dementia care as a model for practice highlights the importance of understanding life histories to support people to live well with dementia, including their family carers.

Lewis, C and Cotterell, C. (2018). ‘Social isolation and older black, Asian and minority ethnic people in greater Manchester’. University of Manchester Institute for collaborative research on Ageing. Accessed 7 October 2019. [ https://www.ambitionforageing.org.uk/social-isolation-and-older-people-black-asian-and-minority-ethnic-people-greater-manchester-%E2%80%93-new].

This report reviews literature on social isolation of BAME older people, differences between particular ethnic groups and how to gather more evidence of the problem.

Lipman, V. (2014). Inquiry into the Future of Voluntary Service Support for Black and Minority Ethnic Older People. National Coalition for Independent Action Inquiry into the Future of Voluntary Services, Working Paper 11. Accessed 7 October 2019. [http://www.independentaction.net/wp-content/uploads/2014/07/BAME-paper-final.pdf].

Methods:

  • Review of secondary literature relating to the impact of austerity on voluntary sector organisations supporting BAME elderly in England and Wales and interviews with voluntary sector organisations. The review includes consideration of the impact of recent legislation; the Equalities Act 2010 and the Health and Social Care Act 2012.

Main findings:

  • Context: Lipman’s report includes a good overview of the socio-economic context for BAME elderly (p5). They tend to have lower savings and less wealth than their white counterparts, with employment patterns that have disrupted their chances of high occupational pensions. Lipman cites reports showing that lower rates of employment and pay among the BAME population lead to greater poverty in old age; for instance, while 16% of white pensioners live in poverty, this figure rises to 46% of Bangladeshi and Pakistani pensioners and 25% of Black Caribbean pensioners. Lipman cites Victor (2012) as showing levels of reported loneliness for BAME older people, with the exception of the Indian population, very much higher than for the general population, ranging from 24% to 50% among those originating from China, Africa, the Caribbean, Pakistan and Bangladesh compared to the general profile of 8–10% for White British older people.
  • Dependence on voluntary sector: Lipman notes that despite the heavy reliance of BAME elderly on the voluntary sector there was no ‘comprehensive database’ about this sector’s help for BAME elderly. Institutional racism is a contributor to ‘the consistent lack of targeted responses to BAME older people’ (18). Because mainstream services do not meet their needs BAME elderly are dependent on the voluntary sector and they need better funding including to help BAME elderly take action themselves and raise their voices.
  • Neither the Equalities Act nor the Health and Social Care Act 2012 are likely to improve the situation.

Liu, X., Cook, G. and Cattan, M. (2016). ‘Support networks for Chinese older immigrants accessing English health and social care services: the concept of Bridge People.’ Health and Social Care in the Community, vol 25, no 2, March 2017, pp 667-677. Accessed 7 October 2019. [https://onlinelibrary.wiley.com/doi/abs/10.1111/hsc.12357]

Methods:

  • Qualitative focus groups and interviews with Chinese elderly and their supporters about their knowledge about and access of care services in England.

Findings:

  • Access was difficult due to language barriers,  lack  of information  and  instrumental  support,  and  emotional  and cultural
  • However, some relied on ‘bridge people’ supporters – family and friends, public sector workers and staff from community-based Chinese organisations – who tended to be bilingual and gave support for free.
  • ‘Bridge people’ should be recognised and identified by health, social care and housing services to promote engagement and use of services by older Chinese people.

De Noronha, N. (2019) ‘Housing and the older ethnic minority population in England’. Race Equality Foundation; Housing Learning and Improvement Network. Accessed 7 October 2019. [https://www.housinglin.org.uk/_assets/Resources/Housing/Support_materials/Briefings/HLIN_Briefing_BME_Housing.pdf]

Abstract: The evidence on housing disadvantage amongst the older black and minority ethnic (BME) population is explored. As the age profile of BME and migrant people converges towards that of the general UK population, it is likely that their future housing needs will entail increased demand for supported housing and adaptations to their homes. This report identifies the demographic changes in the BME population; the extent to which older BME people experience housing disadvantage compared to the white British population; what factors may contribute to this disadvantage; and the spatial concentration of BME older people in urban areas in England. It uses 2011 Census microdata and 2011 Census aggregate data: housing deprivation is indicated by overcrowding, having no central heating, or living with another household. The briefing is part of a broader dialogue with the Race Equality Foundation, Housing LIN and the Centre for Ageing Better. It reflects the opportunity to improve the quality of life of older BME people, by collecting evidence of the barriers that affect their experiences of housing and the ways that local agencies have overcome them. It finds a seemingly ongoing gap in the evidence base regarding the extent to which older BME people have access to suitable, high quality extra care and specialist housing that meets their needs.

Victor, C., Martin, W. and Zubair, M. (2012) Families and caring amongst older people in South Asian communities in the UK: a pilot study, European Journal of Social Work, 15:1, 81-96, DOI: 10.1080/13691457.2011.573913

https://www.tandfonline.com/doi/abs/10.1080/13691457.2011.573913

Methods:

  • Qualitative in depth interviews with 110 male and female Pakistani and Bangladeshi participants over the age of 50.

Findings:

  • The Bangladeshi and Pakistani communities are characterised by high levels of morbidity, deprivation and social exclusion compared with both other minority groups and the more general population.
  • Most participants in this project had not anticipated ‘growing old’ in the UK, but only a few intended to return to Bangladesh/Pakistan when they retired.
  • Strong links with the local community were found to be the norm, providing vital resources in coping with growing old in a foreign land, a focus for social engagement, and support in times of celebration (weddings) or stress (bereavement).
  • Expectations of their children providing care for old age were strong and ‘state’ care services were viewed as being used only as a last resort. However, some participants were uncertain if their expectations would be realised in the future; and others were ambivalent about having such expectations of their children.

Victor, C., Zubair, M. and Martin, W. (2018) Families and caring in South Asian communities IN Walker, A. (ed.) The New dynamics of Ageing. UK: Policy Press

This chapter contains a review of more recent studies.

Vlachantoni, A., Feng, X., Evandrou, M. and Falkingham, J. (2015). ‘Ethnicity and occupational pension membership in the UK’. Social Policy and Administration, vol 49, no 7 pp 801-823. Accessed 7 October 2019. [https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/money-matters/rb_sept14_ethnicity_and_occupational_pension.pdf]

Methods:

  • Review of data from the UK Household Longitudinal Study to explore the odds ratios of membership in an employer’s pension scheme among working-age individuals from minority ethnic groups and the White British population, taking into account factors such as migration history and public or private sector employment.

Findings:

  • Ethnicity remains a strong determinant of a person’s pension protection prospects through being in paid work, being an employee and working for an employer who offers a pension scheme. However, for those working for an employer who does offer a pension scheme, the effect of ethnicity on their odds of being a member of that scheme reduces, except among Pakistani and Bangladeshi people for whom the differentials remain.

Literature on the problems of those caring for older BAME relatives

One problem with the literature on social care is that some reports that purport to be about the needs of carers are more about what carers want for the elderly people they care for, rather than what they want for themselves. For example, carers may ask for support services providing meals to be more culturally appropriate. The carer would then be able to recommend to their elderly relative that they use such services, which would offer them some respite and prevent their depletion as carers. Such measures help them as carers indirectly. Measures that could be categorised as more direct help for carers might include flexible working arrangements or social groups for them to alleviate their isolation. In practice many of the studies of carers in this section cover both direct and indirect issues but with less attention to direct.

Carers UK (2011). ‘Half a million voices: improving support for BAME carers.’ London: Carers UK . Accessed 7 October 2019.  [https://www.carersuk.org/for-professionals/policy/policy-library/half-a-million-voices-improving-support-for-bame-carers]

Methods:

  • This report, by the leading carers’ NGO in the UK, is one of the most comprehensive into the problems of BAME carers in recent years. It primarily relates to England only and includes those BAME people caring for young as well as elderly people. It draws on the 2001 census but recognises the census may under-report some BAME people.

Findings:

  • BAME carers in England save the state £7.9 billion a year, equivalent to 41% of local authority spending on social care.
    • There are 503, 224 BAME carers in England.
    • 10% of England’s carers are from a BAME background.
    • Indian carers are the largest BAME group, as 2.2% of all carers.
    • Black Caribbean carers represent 0.9% of all carers.
    • Every year, 180,000 BAME people become carers.
  • BAME carers are significantly more likely to provide over 20 hours a week care than their white counterparts. 105,109 BAME carers (21%) provide over 50 hours per week. 10% of all carers providing round the clock care are from BAME communities.
  • 60,120 BAME carers in England are in poor health, slightly higher (by 0.6%) than White British carers.
  • The majority of BAME carers are of working age; nearly a quarter of a million BAME carers, 241,320, juggle work and care.
  • According to the 2001 census in the West Midlands, there are 13,719 ‘white other’ 36,908 ‘Asian’, 8,692’Black’, 841 ‘Chinese’ 3,330 ‘mixed ethnicity’ 796 ‘other ethnic’ carers making a total of 64,286, compared with 494,142 ‘white British’.
  • They re-iterated the findings of the ‘Beyond we care too’ report outlined above.

Carers UK (2019) ‘Facts about carers’. Policy Briefing. London: Carers UK. Accessed 7 October 2019. [https://www.carersuk.org/images/Facts_about_Carers_2019.pdf]

This report is about carers in general but contains information about the increase in BAME carers and their lack of support by the state compared with their white counterparts.

Elias, J., Pearson, R., Phipps, B., Rai, S., Smethers, S. and Tepe-Belfrage, D. (2016). ’Towards a new deal for care and carers’. Report of the Political Studies Association Commission on Care by Universities of Warwick, Sheffield, Women’s Budget Group, Fawcett Society. Accessed 18 October 2019. [http://www.commissiononcare.org/]

This report’s conclusions included that the adult social care system was failing BAME older people and their carers. Many consultees to the commission countered the comment often made by social care providers and policy-makers that BAME communities are ‘hard to reach’. We have included the report in this section because it makes recommendations to improve informal carers’ lives, including those of BAME older people, directly. It calls on the government to

  • Ensure that any consideration of intergenerational fairness recognises the value of unpaid care work by relatives and friends, the depletion they experience in doing this work and provides appropriate services to support them.
  • Introduce a new entitlement to family leave so that carers are able to take time off work without losing their jobs. At least part of this entitlement should be paid leave.
  • Drive a culture of flexibility for employees in the workplace. Progress from the right to request flexible working to a presumption of flexibility so that all jobs are offered on a flexible working basis unless there is a business case for them not to be.
  • Invest in supporting carers to return to work. Incentivise employers to employ people with caring responsibilities and tighten legislation to prevent them being discriminated against at work.

In addition it urges the government to establish and promote a national source of information and guidance for individuals and family members about entitlements, availability of different services, and assessments.

It makes the following recommendations that, if applied in the case of BAME older people, would improve access to and quality of care services:

  1. Local authorities should calculate the numbers of people living in their area with unmet care needs and set targets to rapidly reduce this number over time.
  2. The Care Quality Commission should monitor local authority performance against these improved plans. New Combined authorities and Metro Mayors should use the opportunity presented by devolution to create a sustainable social care infrastructure in their region.

Greengross, S. (2013) ‘Dementia does not discriminate: the experiences of black, Asian and minority ethnic communities.’  London: All-Party Parliamentary Group on Dementia, July 2013. Accessed 7 October 2019. [https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/appg_2013_bame_report.pdf]

Methods:

  • There are many studies on caring for people with a particular disability or condition. The All Party parliamentary Group on Dementia reflects concerns about those caring for elderly people with the condition of dementia, taking evidence from numerous groups and individuals.

Findings:

  • We quote one of its many findings here because it expresses well what emerges from some other reports:
    • ‘It is important to avoid assumptions that families from BAME communities do not require any outside help. Carers of people with dementia experience greater strain and distress than carers of other older people. The risk of stereotyping is a failure by services to reach out to BAME communities and ensure services are in place to support the wellbeing of carers and individuals with dementia’ (10).

Greenwood, N., Habbi, R., Smith, R., and Manthorpe, J. (2015) ‘Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature.’ Health Soc Care Community. 2015;23(1):64‐78. Accessed 7 October 2019. [https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.12116]

Methods:

  • The authors review several smaller studies, some of which we reference fully at the end.

Findings:

  • They conclude there is a ‘dearth’ of research generally. Also, of the thirteen studies they found in their review, few compared minority ethnic carers with those from majority ethnic groups.
  • Studies they review of barriers more explicitly related to cultural or ethnic factors include Hubert (2006), a London based study where the carers, from mixed BAME ethnic groups, were mainly caring for people with learning disabilities rather than elderly, Merrell et al. (2006), a Welsh study of carers of Bangladeshi origin, and Netto (1998) a Scottish study of BAME carers, all reporting language barriers.
  • Hubert (2006), Merrell et al. (2006), Netto (1998) and Hepworth (2005), a UK based study of South Asian families, of whom only 5 of the 31 people cared for were elderly, report concerns about cultural and religious appropriateness. Katbamna et al (2002) report concerns that services will be racist.
  • Interestingly the authors say some barriers identified in qualitative studies were not highlighted in quantitative ones, which indicates the importance of qualitative approaches.
  • In terms of satisfaction with services, Hepworth (2005), studying South Asian carers, found greater satisfaction with support groups and carers’ centres than with social workers. Yeandle et al. (2007) reported that minority ethnic carers were more likely to say that they were not aware of services, that services were insensitive to their needs and that their use of services was restricted by lack of information, cost and lack of flexibility.

National Black Carers and Care Workers Network and Afiya Trust (2008) Beyond we care too: putting black carers in the picture UK: Afiya Trust for the National Black Carers and Carers Workers network. Accessed 7 October 2019. [https://www.southglos.gov.uk/documents/beyond_we_care_too.pdf]

Methods:

  • This is one of the most comprehensive reports on BAME carers and is cited often. It draws on other literature and their own survey (of 300 BAME carers) and interviews with carers and support groups in England.

Findings:

  • BAME carers wanted to be approached in a personal face to face way. However many mainstream carers groups were not reaching out to them. The report authors accept the good intentions behind ‘mainstreaming’, where services are provided to all ethnic groups, but argue the reality is that many BAME carers want access to BAME specific groups, such as lunch clubs or support with transport for days out, which tend to be run by the voluntary sector. Therefore, voluntary sector organisations play a key role as gateways to information, support and services for carers.
  • However, if such groups are the main point of contact for BAME elderly and their carers they need to be better informed about the complex state social care system in order to be able to keep BAME elderly and their carers better informed about what they might be entitled to and how to navigate it. Voluntary sector groups for BAME elderly also need to be better funded long term.
  • Some BAME carers found it hard to identify with the term ‘carer’, as used by service providers.
  • Some BAME carers have poor knowledge of services and expressed ‘lack of confidence’ in the state’s ability to provide culturally relevant or appropriate services. They might ‘inadvertently’ give the false impression that they did not need services when in reality they were not able ‘imagine how services could help them’. Carers who were in receipt of services were more likely to ask for more of the same services or would suggest how that service could be made more culturally relevant.
  • BAME carers wanted the personal care services delivered to the person they supported to be more culturally relevant; such as with washing, dressing, diet and language.
  • BAME carers valued services for enabling participation in community events such as attending weddings, places of worship, rather than for example activities like shopping or hobbies which might be provided as outings by statutory services.

Quality of state and voluntary sector support

The Afiya Trust (2012). ‘Living in the margins: an interim report on the impact of local government social care budget cuts on BME communities’. For information, see press release accessed 7 October 2019  [https://www.carersuk.org/news-and-campaigns/press-release-rss/505-one-in-five-local-authorities-failing-bme-communities-by-ignoring-equality-legislation-claims-new-campaign-by-health-charity]

Responses of 118 English local authorities to a Freedom of Information request by the Afiya Trust supported by Carers UK, from Nov 2011 to Feb 2012  suggested 1/5 local authorities were failing in their equality duty to BAME people when planning cuts. For instance adult social service departments did not conduct equality impact assessments despite it being part of their duty under the 2010 Equality Act or keep data on how much of their funding is directed towards BAME people.

Blake, M. et al. (2017). ‘A collaborative exploration of the reasons for lower satisfaction with services among Bangladeshi and Pakistani social care users.’ Health and Social Care in the Community, vol 25, no 3, May 2017, pp 1090-1099. Accessed 7 October 2019. [https://dspace.stir.ac.uk/bitstream/1893/24502/1/HSCC-OA-16-0057.pdf]

Methods:

  • In-depth interviews  were  conducted  in  Birmingham,  Leeds  and  London  during  2012-2013  with  63 Bangladeshi,  Pakistani  and  white  British  service  users  and  24  social  care  managers,  social  workers and  care workers. A further 34 cognitive interviews and three collaborative workshops were conducted.

Findings:

  • Higher dissatisfaction among  Bangladeshi  and  Pakistani  service  users  reported  in  social  care  surveys  was  not  due  to  questionnaire design. Instead cultural  differences  also  emerged  as  affecting experiences  of  social  care, including misunderstandings  about  family  roles  in  care;  gender  issues, especially  relating  to  women;  language  and  communication  barriers,  alongside  the  need  for  a  more  nuanced approach  to  ethnic  ‘matching’;  and  continuing  limited  cultural  understanding  among  care
  • They recommended raising awareness of services  within communities;  improving support for informal carers; service  user input  to  assessments;  consistent  and  ongoing  sharing  of  information;  improving  access;  and  more  efforts  to diversify  and  appropriately  train  the  social  care

Care Quality Commission (2016). ‘The state of health care and adult social care in England 2015/6’. HC 706 UK: Care Quality Commission.  Accessed 7 October 2019.[https://www.cqc.org.uk/sites/default/files/20161019_stateofcare1516_web.pdf]

Methods:

  • 16,000 plus people completed an online ‘share your experience’ survey and they distilled from that experiences of BAME elderly.

Findings:

  • Context: In 2014/15 only 9.6% of adults receiving long term social care support were BME despite the fact that BME amount to 14.6% of the total population, in part due to the fact that the 2011 census shows a smaller proportion are elderly and in part greater difficulties in accessing appropriate care due to information barriers
  • The 2014/15 survey of personal social services adult social care in England 2014/15 by the Health and Social Care Information Centre showed that people from BME groups were more likely than people from white ethnic groups to have tried to find information, but were also more likely to say that they found it fairly or very difficult to find information or advice (129)
  • In analysis of patient surveys for Better care in my hands they found BAME less likely to say they felt involved in their own care including in GP practices (this is all age)
  • 2015 adult social care survey showed BAME still less satisfied with care and support services than whites.

Care Quality Commission and Race Equality Foundation (2019).  Press release ‘Declare your care campaign: people from black and ethnic minority communities.’ Accessed 7 October 2019. [https://www.cqc.org.uk/news/releases/new-research-care-quality-commission-shows-racial-disparity-people-raising-concerns]

A Care Quality Commission report following a campaign to encourage BAME people to raise their concerns about care following repeated surveys showing they have more concerns than the white population. The findings show that, for instance,

  • Almost half of BME people with a previous mental health problem (48%) have wanted to raise concerns about mental health services, compared to just 13% of non-BME people with a mental health problem.
  • 84% of BME people with a mental health problem have also wanted to raise concerns or make complaints about the standard of their care more generally, in comparison to 63% of non-BME people with a mental health problem.
  • Reasons highlighted as to why people don’t feed back on their standard of care include not knowing who to raise it with (33%) and not wanting to be a ‘troublemaker’ (33%). Additionally, a third of people asked (37%) felt that nothing would be changed by speaking up.

Ellins, J. and Glasby, J. (2016). ‘You don’t know what you are saying “Yes” and what you are saying “No” to’: hospital experiences of older people from minority ethnic communities.’ Ageing and Society, vol 36, no 1, January 2016, pp 42-83. Accessed 7 October 2019. [https://www.cambridge.org/core/journals/ageing-and-society/article/you-dont-know-what-you-are-saying-yes-and-what-you-are-saying-no-to-hospital-experiences-of-older-people-from-minority-ethnic-communities/82E40B0DAAA76AC224EFEDF10499D5FE]

Methods:

  • This paper reports findings from a larger study exploring older people’s experiences of care transitions, focusing on the findings from one case study area which explored the hospital and discharge experiences of older BAME people in England. A participatory approach was adopted, with older people from the local area collaborating in the design, delivery and analysis of the research as ‘co-researchers’. Twenty-four in-depth narrative interviews were carried out with people who had experienced a recent hospital stay as a patient or a family member providing care and support.

Findings:

  • Language barriers to accessing mainstream services appear to be a stronger predictor of perceived quality of care than ethnic origin per se. People who had limited English proficiency struggled to understand, communicate and participate in their care. Where professional services were not available or requested, interpreting was provided informally by other patients, family members, hospital staff in clinical and domestic roles, or not at all.
  • They conclude that targeted strategies are required to ensure appropriate and effective hospital services for a multicultural population.

Greenwood, N., Holley, J., and Elmers, T. (2017). ‘Assessing  satisfaction  with  social  care  services  among  black  and  minority  ethnic  and  white  British  carers  of stroke survivors in England.’ Health and Social Care in the Community, vol 25, no 5, September 2017, pp 1571-1580. Accessed 7 October 2019. [https://eprints.soton.ac.uk/399163/1/hsc12298.pdf]

Methods:

  • This qualitative study explores satisfaction with services among fifty seven black Caribbean,  black  African,  Asian  Indian,  Asian  Pakistani  and  white  British ‘informal carers’ in

Findings:

  • Thematic analysis of the interviews showed that participants often struggled to identify  specific  ‘incidents’ to explain their satisfaction or dissatisfaction with services; when  describing  satisfactory  services,  participants talked  mostly  about  specific  individuals  and  relationships whereas unsatisfactory  experiences  centred  on  services overall such as inconsistency, insufficient or poor care. Lowest level ratings were rare.
  • Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall, giving more top ratings and frequently  took  a  more  overall  view  of  services,  highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services.

Lipman, V. (2015). ‘Contracts and commissioning: what’s happening to social care services for black and minority ethnic older people.’ Working with Older People, vol 19, no 2, 2015, pp 85-93. Accessed 7 October 2019. [https://www.emerald.com/insight/content/doi/10.1108/WWOP-09-2014-0028/full/html]

This study reviews the literature on funding of voluntary sector services targeted at helping BAME elderly and their carers. It also conducts semi-structured interviews with service providers.  They conclude that there is some evidence that BME voluntary organisations are experiencing disproportionately greater funding cuts than mainstream voluntary service providers. Moreover, some mainstream providers reported reducing services targeted at BME older people, while others expressed the view that choices for BME older people are likely to become more limited following recent health and equalities policy changes.

They suggest that practitioners should therefore contribute to data collection about protected characteristics, such as race/ethnicity to establish whether older BME people’s needs are being assessed equitably; whether access to care and support is easy; and how market-shaping at local levels can ensure a range of providers.

Manthorpe, J., Iliffe, S., Moriarty, J., Cornes, M., Clough, R., Bright, L., & Rapaport, J. (2009). ‘“We are not blaming anyone, but if we don’t know about amenities, we cannot seek them out”: Black and minority older people’s views on the quality of local health and personal social services in England’. Ageing & Society, 29(1): 93-113. Accessed 7 October 2019. [https://www.cambridge.org/core/journals/ageing-and-society/article/we-are-not-blaming-anyone-but-if-we-dont-know-about-amenities-we-cannot-seek-them-out-black-and-minority-older-peoples-views-on-the-quality-of-local-health-and-personal-social-services-in-england/ACF9C0288A307223C4F94DD77086E472]

Methods:

  • Research conducted for the then Healthcare Commission to ensure it met the National Service Framework for older people. In ten English local authorities, the authors conducted public and group listening events, individual interviews involving 1,839 older people, 70% of whom completed a monitoring form. On the form 30% defined themselves as BAME.

Findings:

  • Specific concerns such as dearth of translators, lack of visual aids for those illiterate
  • Discrimination by local NHS or council services; for instance, a Somali carers’ group representative said GPs often did not refer people on to non-medical services like housing
  • Precarity of funding eg for day centres
  • Previous experiences of racism in mainstream services and reluctance to use them as a result
  • Only variable contribution of older people to service planning and development, despite the fact that when arrangements for travel and translation are made, BAME elderly are no ‘harder to reach’ than the white population. However, many, regardless of ethnicity, wanted to contribute anonymously.
  • They concluded overall: ‘The concerns were more about the incomplete recognition of the culturally-specific needs of older people from black and minority ethnic groups by mainstream services than about the need to develop separate services for black and minority ethnic older people’.

Willis, R., Khambhaita, P., Pathak, P. and Evandrou, M. (2016). ‘Satisfaction with social care services among South Asian and White British older people: the need to understand the system’. Ageing and Society, vol 36, no 7, August 2016, pp 1364-1387. Accessed 7 October 2019. [https://www.cambridge.org/core/journals/ageing-and-society/article/satisfaction-with-social-care-services-among-south-asian-and-white-british-older-people-the-need-to-understand-the-system/91033390C999A33EEEEA65F1BE284104]

Methods:

  • This study conducted in-depth interviews with 82 South Asian and White British social care service users and family carers, the majority of whom were older people. Thematic analysis was used

Findings:

  • A key theme was understanding the social care system. Participants with a good understanding of the system were more able to adapt and achieve control over their care. Participants with a poor understanding were uncertain about how to access further care, or why a service had been refused. More White British than South Asian participants had a good understanding of the system.
  • Language was an important facilitator of care for South Asian participants, but ethnic matching with staff was less important. They recommend better communication throughout the care process.

Cooper, C. Rapaport, R., Robertson, S.  (2018). ‘Relationship  between  speaking  English  as  a  second  language  and  agitation  in  people  with  dementia living  in care homes: results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey’. International Journal of Geriatric Psychiatry, vol 33, no 3, March 2018, pp 504-509. Accessed 7 October 2019. [https://onlinelibrary.wiley.com/doi/full/10.1002/gps.4786]

Methods:

  • Between 2014  and  2015  staff,  residents  with  dementia themselves  and  their  family  carers  from  86  English care  homes  were  interviewed; 71 out  of 1,420  (5%)  of  care  home  residents  with  dementia  interviewed  spoke  English  as  a  second

Findings:

  • Speaking English as  a  second  language  compared  with  as  a  first  language  was  associated  with  significantly higher  Cohen-Mansfield  Agitation Inventory and Neuropsychiatric  inventory scores.
  • Staff narratives described how  linguistic  and  culturally  isolating  being  in  a  care  home  where  no  residents  or  staff  share  one’s  culture  or language could be for people with dementia, and how this sometimes caused or worsened agitation.

Warwick University, social sciences, school of law (n.d) Exploring the impact of welfare reform and public spending cuts on BAME people Accessed 7 October 2019; copy and paste url if hyperlink does not work. [https://warwick.ac.uk/fac/soc/law/research/centres/chrp/spendingcuts/resources/reports-uk/#BAME]

Additional References:

Age UK (2019) Later life in the United Kingdom factsheet UK: Age UK. Accessed 7 October 2019. [https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/later_life_uk_factsheet.pdf ]

Lievesley, N. (2013). Evidence to the Birmingham Policy Commission: Healthy Ageing in the 21st Century, Centre for Policy on Ageing: London. Accessed 7 October 2019. [https://www.birmingham.ac.uk/Documents/research/policycommission/AH1BPCIII120213CPA.pdf]

 

 

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