The LIVITY study: Research challenges and strategies for engaging with the black caribbean community in a study of HIV infection

International Journal of Social Research Methodology

Volumn 12, Issue 3, 2009, Pages 197-209

  Anderson, Moji ^a   Solarin, Ijeoma ^a   Gerver, Sarah ^a   Elam, Gillian ^a   MacFarlane, Emma ^a   Fenton, Kevin ^a   Easterbrook, Philippa ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

EID: 70449629432     PISSN: 13645579     EISSN: 14645300     Source Type: Journal    
DOI: 10.1080/13645570701708584     Document Type: Article

References (67)

1. Adams, A., Miller-Korth, N., & Brown, D. (2004). Learning to work together: Developing academic and community research partnerships. Wisconsin Medical Journal, 103(2), 15-19.
2. Aggleton, P., & Parker, R. (2002). A conceptual framework and basis for action: HIV/AIDS stigma and discrimination. UNAIDS. Retrieved November, 2004 from http://www.unaids.org/html/pub/publications/irc-pub02/jc891-ac_framework_en_pdf.pdf
3. Anderson, J., & Doyal, L. (2004). Women from Africa living with HIV in London: A descriptive study. AIDS Care, 16(1), 95-105.
4. Atkinson, D.R., Furlong, M.J., & Poston, W.C. (1986). Afro-American preferences for counselor characteristics. Journal of Counseling Psychology, 33(3), 326-330.
5. Benoit, C., Jansson, M., Millar, A., & Phillips, R. (2005). Community-academic research on hard-to-reach populations: benefits and challenges. Qualitative Health Research, 15(2), 263-282.
6. Bogart, L.M., & Thorburn, S. (2005). Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention among African Americans? Journal of Acquired Immune Deficiency Syndrome, 38(2), 213-218.
7. Boyd, A.E., Murad, S., O'Shea, S., de Ruiter, A., Watson, C., & Easterbrook, P.J. (2005). Ethnic differences in stage of presentation of adults newly diagnosed with HIV-1 infection in south London. HIV Medicine, 6(2), 59-65.
8. Brooks, R., Etzel, M., Hinojos, E., Henry, C., & Perez, M. (2005). Preventing HIV among Latino and African-American gay and bisexual men in a context of HIV-related stigma, discrimination, and homophobia: Perspectives of providers. AIDS Patient Care and STDs, 19(11), 737-744.
9. Clark, H.J., Lindner, G., Armistead, L., & Austin, B.J. (2002). Stigma, disclosure, and psychological functioning among HIV-infected and non-infected African-American women. Women and Health, 38(4), 57-71.
10. Cohall, A. (1999). Applied prevention research: Challenges of working with urban communities. American Journal of Preventive Medicine, 16(3S), 16.
11. Curtis, S., & Lawson, K. (2000). Gender, ethnicity and self-reported health: The case of African-Caribbean populations in London. Social Science and Medicine, 50, 365-385.
12. Diamini, P., Kohi, T., Uys, L., Phetlhu, R., Chirwa, M., Naidoo, J., Holzemer, W., Greeff, M., & Makoae, L. (2007). Verbal and physical abuse and neglect as manifestations of HIV/AIDS stigma in five African countries. Public Health Nursing, 24(5), 389-399.
13. Dias, S., Matos, M., & Gonçalves, A. (2006). AIDS-related stigma and attitudes towards AIDS-infected people among adolescents. AIDS Care, 18(3), 208-214.
14. Dinnall, M. E. T., & Bain, B.C. (1994). What church leaders know about the human immunodeficiency virus infection and how they are responding to the AIDS epidemic: A study from Kingston and St. Andrew, Jamaica. West Indian Medical Journal, 43(1), 21.
15. Dodds, C., Keogh, P., Chime, O., Haruperi, T., Nabulya, B., Ssanyu Sseruma, W., et al. (2004). Outsider status: Stigma and discrimination experienced by gay men and African people with HIV. London: Sigma Research.
16. Eccles, J. (1996). The power and difficulty of university-community collaboration. Journal of Research on Adolescence, 6(1), 81-86.
17. Elam, G. (1999). Don't you understand me: Matching interviewers and interviewees. Paper presented at the International Qualitative Health Research Conference, University of Newcastle, Australia.
18. Elam, G., & Fenton, K. (2003). Researching sensitive issues and ethnicity: Lessons from sexual health. Ethnicity and Health, 8(1), 15-27.
19. Elam, G., Fenton, K., Johnson, A.M., Nazroo, J., & Ritchie, J. (1999). Exploring ethnicity and sexual health: A qualitative study of the sexual attitudes and lifestyles of five ethnic minority communities in Camden and Islington. London: SCPR.
20. Elam, G., McMunn, A., & Nazroo, J. (2001). Feasibility study for health surveys among black Africans living in England: Stage three-The health experiences of people of African origin living in London. London: Department of Health.
21. Elliott, E., Watson, A.J., & Harries, U. (2002). Harnessing expertise: Involving peer interviewers in qualitative research with hard-to-reach populations. Health Expectations, 5, 172-178.
22. Erwin, J., Morgan, M., Britten, N., Gray, K., & Peters, B. (2002). Pathways to HIV testing and care by black African and white patients in London. Sexually Transmitted Infections, 78(1), 37-39.
23. Erwin, J., & Peters, B. (1999). Treatment issues for HIV+ Africans in London. Social Sciences and Medicine, 49(11), 1519-1528.
24. Evans, B.A., Bond, R.A., & MacRae, K.D. (1999). Sexual behaviour and sexually transmitted infection among African and Caribbean men in London. International Journal of STDs and AIDS, 10(11), 744-748.
25. Fenton, K., Chinouya, M., Davidson, O., Copas, A., & MAYISHA study team. (2002). HIV testing and high risk sexual behaviour among London's migrant African communities: A participatory research study. Sexually Transmitted Infections, 78(4), 241-245.
26. Fenton, K., Johnson, A.M., McManus, S., & Erens, B. (2001). Measuring sexual behaviour: Methodological challenges in survey research. Sexually Transmitted Infections, 77, 84-92.
27. Flowers, P., Davis, M., Hart, G., Rosengarten, M., Frankis, J., & Imrie, J. (2006). Diagnosis and stigma and identity amongst HIV positive Black Africans living in the UK. Psychology and Health, 21(1), 109-122.
28. Fujino, D.C., Okazaki, S., & Young, K. (1994). Asian-American women in the mental health system: An examination of ethnic and gender match between therapist and client. Journal of Community Psychology, 22(2), 164-176.
29. Giddens, A. (1990). Consequences of modernity. Stanford, CA: Stanford University Press.
30. Herek, G.M., & Capitanio, J.P. (1993). Public reactions to AIDS in the United States: A second decade of stigma. American Journal of Public Health, 83(4), 574-577.
31. Herek, G.M., & Capitanio, J.P. (1994). Conspiracies, contagion and compassion: Trust and public reactions to AIDS. AIDS Education and Prevention, 6(4), 365-375.
32. Herek, G.M., Gillis, J.R., Glunt, E.K., Lewis, J., Welton, D., & Capitanio, J.P. (1998). Culturally sensitive AIDS educational videos for African American audiences: Effects of source, message, receiver, and context. American Journal of Community Psychology, 26(5), 705-743.
33. Horowitz, C., Arniella, A., James, S., & Bickell, N. (2004). Using community-based participatory research to reduce health disparities in East and Central Harlem. Mt. Sinai Journal of Medicine, 71(6), 368-374.
34. Huang, J., Bova, C., Fennie, K., Rogers, A., & Williams, A. (2005). Knowledge, attitudes, behaviors, and perceptions of risk related to HIV/AIDS among Chinese university students in Hunan, China. AIDS Patient Care and STDs, 19(11), 769-777.
35. Hughes, G., Catchpole, M., & Rogers, P.A. (2000). Comparison of risk factors for four sexually transmitted infections: Results from a study of attenders at three genitourinary medicine clinics in England. Sexually Transmitted Infections, 76, 262-267.
36. Hussain-Gambles, M. (2004). South Asian patients' views and experiences of clinical trial participation. Family Practice, 21(6), 636-642.
37. Johnson, A.M., Mercer, C.H., Erens, B., Copas, A.J., McManus, S., Wellings, K., et al. (2001). Sexual behaviour in Britain: Partnerships, practices, and HIV risk behaviours. Lancet, 358, 1835-1842.
38. Kalichman, S., & Simbayi, L. (2003). HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa. Sexually transmitted infections, 79, 442-447.
39. Kass, N.E., Sugarman, J., Faden, R., & Schoch-Spana, M. (1996). Trust, the fragile foundation of contemporary biomedical research. Hastings Centre Report, 26(5), 25-29.
40. Knipscheer, J.W., & Kleber, R.J. (2004). The importance of ethnic similiarity in the therapistpatient dyad among Surinamese migrants in Dutch mental health care. Psychology and Psychotherapy: Theory, Research and Practice, 77(2), 273-278.
41. Lee, R.M. (1993). Doing research on sensitive topics. London: Sage.
42. Lee, R.M., & Renzetti, C.M. (Eds.). (1993). Researching sensitive topics. Thousand Oaks, CA: Sage.
43. Legris, J., Weir, R., Brown, G., Gafni, A., Stewart, L., & Easton, S. (2000). Developing a model of collaborative research: The complexities and challenges of implementation. International Journal of Nursing Studies, 37(1), 65-79.
44. Low, N., Daker-White, G., Barlow, D., & Pozniak, A. (1997). Gonorrhoea in inner London: Results of a cross sectional study. British Medical Journal, 314, 1719-1723.
45. Low, N., Sterne, J., & Barlow, D. (2001). Inequalities in rates of gonorrhea and chlamydia between black ethnic groups in south east London: Cross sectional study. Sexually Transmitted Infections, 77, 15-20.
46. McLean, C., Campbell, C., & Cornish, F. (2002). African-Caribbean interactions with mental health services in the UK: Experiences and expectations of exclusion as (re)productive of health inequalities. Social Science and Medicine, 56(3), 657-669.
47. McMunn, A.M., Mwanje, R., & Pozniak, A.L. (1997). Issues facing Africans in London with HIV infection. Genitourinary Medicine, 73, 157-158. Retrieved March 18, 2005, from http://neighbourhood.statistics.gov.uk/AreaProfileFrames.asp? for each borough, and www.statistics.gov.uk
48. Mechanic, D., & Meyer, S. (2000). Concepts of trust among patients with serious illness. Social Science and Medicine, 51, 657-668.
49. Meyer, C. (1993). The doctor as gatekeeper: Ethical considerations. HMO Practice, 7(1), 12-14.
50. Molyneux, C.S., Peshu, N., & Marsh, K. (2005). Trust and informed consent: Insights from community members on the Kenyan coast. Social Science and Medicine, 61, 1463-1473.
51. Nadeau, L., & Measham, T. (2006). Caring for migrant and refugee children: Challenges associated with mental health care in pediatrics. Journal of Developmental & Behavioral Pediatrics, 27(2), 145-154.
52. Nelson, R.M., & Merz, J.F. (2002). Voluntariness of consent for research: An empirical and conceptual review. Medical Care, 40(9), V69-V80.
53. Norman, L.R., Carr, R., & Jimenez, J. (2006). Sexual stigma and sympathy: Attitudes towards people living with HIV in Jamaica. Culture, Health and Sexuality, 8(5), 423-433.
54. Orenticher, D. (2005). Making research a requirement of treatment: Why we should sometimes let doctors pressure patients to participate in research. Hastings Center Report, 35(5), 20-28.
55. Parra-Medina, D., D'antonio, A., Smith, S.M., Levin, S., Kirkner, G., & Mayer-Davis, E. (2004). Successful recruitment and retention strategies for a randomised weight management trial for people with diabetes living in rural, medically underserved counties of South Carolina: The POWER study. Journal of the American Dietetic Association, 104(1), 70-75.
56. Pizzi, M. (1992). Women, HIV infection, and AIDS: Tapestries of life, death, and empowerment. American Journal of Occupational Therapy, 46(11), 1021-1027.
57. Robles, R.R., & Shepard, E.W. (2004). Accessing hard-to-reach populations: The illicit drug market as a workplace of the outreach worker in Puerto Rico. Puerto Rico Health Sciences Journal, 23(3), 217-222.
58. Ross, S., Grant, A., Counsell, C., Gillespie, W., Russell, I., & Prescott, R. (1999). Barriers to participation in randomized controlled trials: A systematic review. Journal of Clinical Epidemiology, 52, 1143-1156.
59. Shavers, V.L., Lynch, C.F., & Burmeister, L.F. (2002). Racial differences in factors that influence the willingness to participate in medical research studies. Annals of Epidemiology, 12(4), 248-256.
60. Sherr, L., Barnes, J., Elford, J., Olaitan, A., Miller, R., & Johnson, M. (1997). Women with HIV disease attending a London clinic. Genitourinary Medicine, 73(4), 274-279.
61. Sulmasy, D.P. (1992). Physicians, cost control, and ethnics. Annals of Internal Medicine, 116(11), 920-926.
62. The UK Collaborative Group for HIV and STI Surveillance. (2006). A complex picture. HIV and other sexually transmitted infections in the United Kingdom. London: Health Protection Agency Centre for Infections. Retrieved November 2006, from http://www.hpa.org.uk/publications/2006/hiv_sti_2006/pdf/a_complex_Picture_2006_last.pdf
63. Thom, D.H., & Campbell, B. (1997). Patient-physician trust: An exploratory study. Journal of Family Practice, 44, 169-176.
64. Thomas, S.B., & Quinn, S.C. (1991). The Tuskegee syphilis study, 1932 to 1972: Implications for HIV education and AIDS risk education programs in the black community. American Journal of Public Health, 81(11), 1498-1505.
65. UK Office for National Statistics. (2005). Table KS06 ethnic group. Census 2001: Key statistics for the rural and urban area classification 2004. Retrieved January 2007 from http://www.statistics.gov.uk/StatBase/ssdataset.asp?v1nk=8919&Pos=&ColRank=1&Rank=224. Crown copyright material is reproduced with the permission of the Controller of HMSO.
66. Wickramasuriya, T.V. (1994). Attitudes of medical students at Cave Hill Campus towards AIDS. West Indian Medical Journal, 44, 7-10.
67. Ziguras, S., Klimidis, S., Lewis, J., & Stuart, G. (2003). Ethnic matching of clients and clinicians and use of mental health services by ethnic minority clients. Psychiatric Services, 54(4), 535-541.