Barriers to access and minority ethnic carers' satisfaction with social care services in the community: A systematic review of qualitative and quantitative literature

Health and Social Care in the Community

Volumn 23, Issue 1, 2015, Pages 64-78

  Greenwood, Nan ^a   Habibi, Ruth ^a   Smith, Raymond ^a   Manthorpe, Jill ^b  

^a ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

^b KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Barriers; Caregiving; Carers; Ethnic minorities; Satisfaction; Social care

Indexed keywords

CAREGIVER; COMMUNICATION DISORDER; CONSUMER ATTITUDE; CULTURAL COMPETENCE; DEMOGRAPHY; ETHNIC GROUP; HUMAN; ORGANIZATION AND MANAGEMENT; PSYCHOLOGY; SOCIAL WORK;

CAREGIVERS; COMMUNICATION BARRIERS; CONSUMER BEHAVIOR; CULTURAL COMPETENCY; ETHNIC GROUPS; HUMANS; RESIDENCE CHARACTERISTICS; SOCIAL WORK;

EID: 84913620666     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/hsc.12116     Document Type: Article

References (84)

1. Adamson J., Ben-Shlomo Y., Chaturvedi N. & Donovan J. (2003) Ethnicity, socio-economic position and gender - do they affect reported health-care seeking behaviour? Social Science and Medicine 57 (2), 895-904.
2. Ahmad W.I.U. & Atkin K. (1996) 'Race' and Community Care. Open University Press, Buckingham.
3. Ahmed N. & Rees-Jones I. (2008) 'Habitus and bureaucratic routines', cultural and structural factors in the experience of informal care: a qualitative study of Bangladeshi women living in London. Current Sociology 56, 57-76.
4. Bauld L., Chesterman J. & Judge K. (2000) Measuring satisfaction with social care amongst older service users: issues from the literature. Health and Social Care in the Community 8 (5), 316-324.
5. Bhopal R. (2004) Glossary of terms relating to ethnicity and race: for reflection and debate. Journal of Epidemiology and Community Health 58, 441-445.
6. Bjertnaes O.A., Sjetne I.S. & Iversen H.H. (2012) Overall patient satisfaction with hospitals: effects of patient-reported experiences and fulfilment of expectations. British Medical Journal: Quality and Safety 21, 39-46.
7. Bowling A. (2002) An "inverse satisfaction law"? Why don't older patients criticise health services? Journal of Epidemiology and Community Health 56, 482.
8. Bowling A., Rowe G. & McKee M. (2013) Patients' experiences of their healthcare in relation to their expectations and satisfaction: a population survey. Journal of the Royal Society of Medicine 106 (4), 143-149.
9. Boydell J., Morgan C., Dutta R. et al. (2010) Satisfaction with inpatient treatment for first-episode psychosis among different ethnic groups: a report from the UK AeSOP study. International Journal of Social Psychiatry 58 (1), 98-105.
10. Brodaty H., Thomson C., Thompson C. & Fine M. (2005) Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry 20, 537-546.
11. Campbell J.L., Ramsay J. & Green J. (2001) Age, gender, socioeconomic, and ethnic differences in patients' assessments of primary health care. Quality in Health Care 10 (2), 90-95.
12. Carers UK (2011) Half a Million Voices: Improving Support for BAME Carers. Carers UK, London.
13. Casado B.L., van Vulpen K.S., Davis S.L. & Banghwa L.C. (2011) Unmet needs for home and community-based services among frail older Americans and their caregivers. Journal of Aging and Health 23 (3), 529-553.
14. Centre for Reviews and Dissemination (2009) Systematic Reviews: CRD's Guidance for Undertaking Reviews in Health Care. CRD, University of York, York.
15. Chow C.C.J., Auh E.Y., Scharlach A.E., Lehning A.J. & Goldstein C. (2010) Types and sources of support received by family caregivers of older adults from diverse racial and ethnic groups. Journal of Ethnic and Cultural Diversity in Social Work 19 (3), 175-194.
16. Coker N. (Ed.) (2001) Racism in Medicine: An Agenda for Change. King's Fund, London.
17. Commander M.J., Cochrane R., Sashidharan S.P., Akilu F. & Wildsmith E. (1999) Mental health care for Asian, Black and White patients with non-affective psychoses: pathways to the psychiatric hospital, in-patient and after-care. Social Psychiatry and Psychiatric Epidemiology 34 (9), 484-491.
18. Crow R., Gage H., Hampson S., Hart J., Kimber A., Storey L. & Thomas H. (2002) The measurement of satisfaction with healthcare: implications for practice from a systematic review of the literature. Health Technology Assessment 6 (32), 1-244. Health Technology Assessment NHS R&D HTA Programme.
19. DH (1998) Modernising Social Services. Cm4169. Department of Health, The Stationery Office, London.
20. DH (2005) Carers and Disabled Children Act 2000 & Carers Equal Opportunities Act 2004. Combined Policy Guidance. Department of Health, London.
21. Dilworth-Anderson P., Williams I.C. & Gibson B.E. (2002) Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980-2000). The Gerontologist 42 (2), 237-272.
22. Dunlop D., Manheim L., Song J. & Chang R. (2002) Gender and ethnic/racial disparities in health care utilization among older adults. Journals of Gerontology: Social Sciences 57B (4), S221-S233.
23. Fazil Q., Bywaters P., Ali Z., Wallace L. & Singh G. (2002) Disadvantage and discrimination compounded: the experience of Pakistani and Bangladeshi parents of disabled children in the UK. Disability and Society 17 (3), 237-253.
24. Funk L., Stajduhar K.L., Toye C., Aoun S., Grande G.E. & Todd C.J. (2010) Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliative Medicine 24 (6), 594-607.
25. Gaugler J.E., Kane R.L., Kane R.A. & Newcomer R. (2005) Community based service utilization and its effects on dementia caregiving. The Gerontologist 45 (2), 177-185.
26. Giunta N., Chow J., Scharlach A.E. & Dal Santo T.S. (2004) Racial and ethnic differences in family caregiving in California. Journal of Human Behavior in the Social Environment 9 (4), 85-109.
27. Giuntoli G. & Cattan M. (2012) The experiences and expectations of care and support among older migrants in the UK. European Journal of Social Work 15 (1), 131-147.
28. Greenwood N., Key A., Burns T., Bristow M. & Sedgwick P. (1999) Satisfaction with in-patient psychiatric services: relationship with patient and treatment factors. British Journal of Psychiatry 174, 159-163.
29. Harwood R.H., Sayer A.A. & Hirschfeld M. (2004) Current and future worldwide prevalence of dependency, its relationship to total population, and dependency ratios. Bulletin of the World Health Organisation 82 (4), 251-258.
30. Hatton C., Azmi S., Caine A. & Emerson E. (1998) Informal carers of adolescents and adults with learning difficulties from the South Asian communities: family circumstances, service support and carer stress. British Journal of Social Work 28 (6), 821-837.
31. Health and Social Care Information Centre (2013) Personal Social Services Survey of Adult Carers in England: Provisional Report England 2012-13. Adult Social Care Statistics Team, Health and Social Care Information Centre. Available at:http://www.hscic.gov.uk/catalogue/PUB10963 (accessed on 11/2/2014).
32. Heaton J. (1999) The gaze and visibility of carers: a Foucauldian analysis of the discourse of informal care. Sociology of Health and Illness 21 (6), 759-777.
33. Hensel E., Krishnan M., Saunders K., Durrani N. & Rose J. (2005) Impact of policy shifts on South Asian carers in the United Kingdom. Journal of Policy and Practice in Intellectual Disabilities 2 (1), 10-17.
34. Hepworth D. (2005) Asian carers' perceptions of care assessment and support in the community. British Journal of Social Work 35 (3), 337-353.
35. Hubert J. (2006) Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a South London borough. Disability and Society 21 (3), 259-272.
36. Janevic M.R. & Connell C.M. (2001) Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. The Gerontologist 41 (3), 334-347.
37. Katbamna S., Bhakta P., Ahmad W., Baker R. & Parker G. (2002) Supporting South Asian carers and those they care for: the role of the primary healthcare team. British Journal of General Practice 52 (477), 300-305.
38. Kmet L.M., Lee R.C. & Cook L.S. (2004) Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. Alberta Heritage Foundation for Medical Research, Alberta. Available at: http://www.ihe.ca/documents/HTA-FR13.pdf (accessed on 11/2/2014).
39. Kokanovic R., Petersen A. & Klimidis S. (2006) 'Nobody can help me. I am living through it alone': Experiences of caring for people diagnosed with mental illness in ethno-cultural and linguistic minority communities. Journal of Immigration and Minority Health 8 (2), 125-135.
40. Lai D.W.L. & Surood S. (2008) Service barriers of Chinese family caregivers in Canada. Journal of Gerontological Social Work 51 (3-4), 315-336.
41. Leninger M. (1994) Evaluation criteria and critique of qualitative studies. In: J.M. Morse (Ed) Critical Issues in Qualitative Research Methods. Sage, Newbury Park, CA.
42. Li H. (2004) Barriers and unmet needs for supportive services: experiences of Asian-American caregivers. Journal of Cross-Cultural Gerontology 19, 241-260.
43. Lievesley N. (2010) The Future Ageing of the Ethnic Minority Population of England and Wales. Centre for Policy on Ageing and the Runnymede Trust, London.
44. Linder-Pelz S. (1982) Toward a theory of patient satisfaction. Social Science and Medicine 16 (5), 577-582.
45. Manthorpe J., Moriarty J., Stevens M., Hussein S. & Sharif N. (2012) Promoting the mental well-being of older people from black and minority ethnic communities in United Kingdom rural areas: findings from an interview study. Journal of Rural Studies 28 (4), 406-411.
46. McGrath P., Patton A.P., McGrath Z., Ogilvie K., Rayner R. & Holewa H. (2006) 'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for indigenous people. Health and Social Care in the Community 14 (2), 147-155.
47. Mead N. & Rowland M. (2009) Understanding why some ethnic minority patients evaluate medical care more negatively than white patients: a cross sectional analysis of a routine patient survey in English general practices. British Medical Journal 339, b3450.
48. Merrell J., Kinsella F., Murphy F., Philpin S. & Ali A. (2006) Support needs of carers of dependent adults from a Bangladeshi community. Journal of Advanced Nursing 51 (6), 549-557.
49. Modood T., Berthoud R., Lakey J., Nazroo J., Smith P., Virdee S. & Beishon S. (1997) Ethnic Minorities in Britain: Diversity and Disadvantage. PSI report 843. Policy Studies Institute, London.
50. Moher D., Liberati A., Tetzlaff J. & Altman D.G. (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Medicine 6 (7), 1-6.
51. Molyneaux V., Butchard S., Simpson J. & Murray C. (2011) Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'. Ageing and Society 31 (2011), 422-437.
52. Moriarty J. (2012) The health and social care experiences of BME older people. Better health briefing, update 9. Available at: http://www.kcl.ac.uk/sspp/kpi/scwru/pubs/2012/reports/moriarty2012update9.pdf (accessed on 23/5/2014).
53. Moriarty J., Sharif N. & Robinson J. (2011) SCIE Research Briefing 35: Black and Minority Ethnic People with Dementia and their Access to Support and Services. Social Care Institute for Excellence, London.
54. National Black Carers and Carers Workers Network (2008) Beyond We Care Too Putting Black Carers in the Picture. Afiya Trust for the National Black Carers and Carers Workers Network, London.
55. Netto G. (1998) 'I forgot myself': the case for provision of culturally sensitive respite services for minority ethnic carers of older people. Journal of Public Health Medicine 20 (2), 221-226.
56. Neufeld A., Harrison M.J., Stewart M.J., Hughes K.D. & Spitzer D. (2002) Immigrant women: making connections to community resources for support in family caregiving. Qualitative Health Research 12 (6), 751-768.
57. Newbronner L., Chamberlain R., Bosanquet K., Bartlett C., Sass B. & Glendinning C. (2011) Keeping Personal Budgets Personal: Learning from the Experiences of Older People, People with Mental Health Problems and Their Carers. Research Report. Adults' Services Report, 40. Social Care Institute for Excellence, London.
58. Nunkoosing K. (2005) The problems with interviews. Qualitative Health Research 15 (5), 698-706.
59. Office for National Statistics (2013) Full story: the gender gap in unpaid care provision: is there an impact on health and economic position? Available at: http://www.ons.gov.uk/ons/dcp171776_310295.pdf (accessed on 23/5/2014).
60. Oxford English Dictionary (2014). Available at: http://oxforddictionaries.com/definition/english/ethnic-minority (accessed on 23/5/2014).
61. Parkman S., Davies S., Leese M., Phelan M. & Thornicroft G. (1997) Ethnic differences in satisfaction with mental health services among representative people with psychosis in South London: PRISM study 4. British Journal of Psychiatry 316, 260-264.
62. Parveen S., Morrison V. & Robinson C.A. (2011) Ethnic variations in the caregiver role: a qualitative study. Journal of Health Psychology 16 (6), 862-872.
63. Phillipson L., Jones S.C. & Magee C. (2014) A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. Health and Social Care in the Community 22 (1), 1-12.
64. Pinquart M. & Sörensen S. (2005) Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. The Gerontologist 45 (1), 90-106.
65. Pinquart M. & Sörensen S. (2006) Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. Journal of Gerontology: Psychological Sciences 61B, 33-45.
66. Powell R.A., Holloway F., Lee J. & Sitzia J. (2004) Satisfaction research and the uncrowned king: challenges and future directions. Journal of Mental Health 13 (1), 11-20.
67. Qureshi H. & Rowlands O. (2004) User satisfaction surveys and cognitive question testing in the public sector: the case of personal social services in England. International Journal of Social Research Methodology: Theory and Practice 7 (4), 273-288.
68. Ribeiro O., Paúl C. & Nogueira C. (2007) Real men, real husbands: caregiving and masculinities in later life. Journal of Aging Studies 21 (4), 302-313.
69. Robinson C. & Williams V. (2002) Carers of people with learning disabilities, and their experience of the 1995 Carers Act. British Journal of Social Work 32 (2), 169-183.
70. Salway S. & Ellison G. (2010) Nursing research for a multi-ethnic society. In: K. Gerrish & A. Lacey (Eds) The Research Process in Nursing, pp. 50-61. Wiley-Blackwell, Oxford.
71. Scharlach A.E., Kellman R., Ong N., Baskin A., Goldstein C. & Fox P.J. (2006) Cultural attitudes and caregiver service use: lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work 47 (1/2), 133-156.
72. Sitzia J. & Wood N. (1997) Patient satisfaction: a review of issues and concepts. Social Science and Medicine 45 (12), 1829-1843.
73. Stockwell-Smith G., Kellett U. & Moyle W. (2010) Why carers of frail older people are not using available respite services: an Australian study. Journal of Clinical Nursing 19 (13-14), 2057-2064.
74. Toseland R.W., McCallion P., Gerber T. & Banks S. (2002) Predictors of health and human services use by persons with dementia and their family caregivers. Social Science and Medicine 55 (7), 1255-1266.
75. Townsend D. & Kosloski K. (2002) Factors related to client satisfaction with community-based respite. Home Health Services Quarterly 21 (3/4), 89-106.
76. Vickers T., Craig G. & Atkin K. (2012) Research with Black and Minority Ethnic People Using Social Care Services. SSCR methods review, 11. NIHR School for Social Care Research, London. Available at: http://eprints.lse.ac.uk/43161/ (accessed on 21/9/2013).
77. Whittemore R. & Knafl K. (2005) The integrative review: updated methodology. Journal of Advanced Nursing 52 (2), 546-553.
78. Williams B. (1994) Patient satisfaction: a valid concept? Social Science and Medicine 38 (4), 509-516. Methods review 11. National Institute of Health Research-School for Social Care Research. London School of Economics, London.
79. Williams C. & Johnson M.R.D. (2010) Race and Ethnicity in a Welfare Society. Open University Press, Maidenhead.
80. Williams B., Coyle J. & Healy D. (1998) The meaning of patient satisfaction: an explanation of high reported levels? Social Science and Medicine 47 (9), 1351-1359.
81. Willis R., Price D. & Glaser K. (2013) Ethnicity as a determining factor for instrumental support in mid and later life in England and Wales. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 68 (2), 278-289.
82. Winslow B.W. (1997) Effects of formal supports on stress outcomes in family caregivers of Alzheimer's patients. Research in Nursing and Health 20 (1), 27-37.
83. Winslow B.W. (2003) Family caregivers' experiences with community services: a qualitative analysis. Public Health Nursing 20 (5), 821-837.
84. Yeandle S., Bennett C., Buckner L., Fry G. & Price C. (2007) Diversity in Caring: Towards Equality for Carers. University of Leeds, Leeds.