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BMC Medical Research Methodology
Published in: BMC Medical Research Methodology 1/2014

Open Access 01-12-2014 | Research article

Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups

Authors: Billie Bonevski, Madeleine Randell, Chris Paul, Kathy Chapman, Laura Twyman, Jamie Bryant, Irena Brozek, Clare Hughes

Published in: BMC Medical Research Methodology | Issue 1/2014

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Abstract

Background

This study aims to review the literature regarding the barriers to sampling, recruitment, participation, and retention of members of socioeconomically disadvantaged groups in health research and strategies for increasing the amount of health research conducted with socially disadvantaged groups.

Methods

A systematic review with narrative synthesis was conducted. Searches of electronic databases Medline, PsychInfo, EMBASE, Social Science Index via Web of Knowledge and CINHAL were conducted for English language articles published up to May 2013. Qualitative and quantitative studies as well as literature reviews were included. Articles were included if they reported attempts to increase disadvantaged group participation in research, or the barriers to research with disadvantaged groups. Groups of interest were those described as socially, culturally or financially disadvantaged compared to the majority of society. Eligible articles were categorised according to five phases of research: 1) sampling, 2) recruitment and gaining consent, 3) data collection and measurement, 4) intervention delivery and uptake, and 5) retention and attrition.

Results

In total, 116 papers from 115 studies met inclusion criteria and 31 previous literature reviews were included. A comprehensive summation of the major barriers to working with various disadvantaged groups is provided, along with proposed strategies for addressing each of the identified types of barriers. Most studies of strategies to address the barriers were of a descriptive nature and only nine studies reported the results of randomised trials.

Conclusions

To tackle the challenges of research with socially disadvantaged groups, and increase their representation in health and medical research, researchers and research institutions need to acknowledge extended timeframes, plan for higher resourcing costs and operate via community partnerships.
Appendix
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Literature
1.
National Institute of Health (NIH): Guidelines on the inclusion of women and minorities as subjects in clinical research. NIH Guide. 1994, 23: 2-3.
2.
Heiat A, Gross CP, Krumholz HM: Representation of the Elderly, Women, and Minorities in Heart Failure Clinical Trials. Arch Intern Med. 2002, 162 (15): doi:10.1001/archinte.162.15.1682
3.
Johnson MS: Generalizability of clinical trials using homogenous samples – a metaanalysis. J Assoc Acad Minor Phys. 1990, 1: 31-33.PubMed
4.
Rogers WA: Evidence based medicine and justice: a framework for looking at the impact of EBM upon vulnerable or disadvantaged groups. J Med Ethics. 2004, 30: 141-145. 10.1136/jme.2003.007062. doi: 10.1136/jme.2003.007062PubMedPubMedCentral
5.
Albain KS, Unger JM, Crowley JJ, Coltman CA, Hershman DL: Racial disparities in cancer survival among randomised clinical trial patients of the Southwest Oncology Group. J Natl Cancer Inst. 2009, 101: 984-992. 10.1093/jnci/djp175.PubMedPubMedCentral
6.
Singh GK, Azuine RE, Siahpush M: Global Inequalities in Cervical Cancer Incidence and Mortality are Linked to Deprivation, Low Socioeconomic Status, and Human Development. Int J MCH AIDS. 2012, 1 (1): 17-30.
7.
Sateren WB, Trimble EL, Abrams J, Brawley O, Breen N, Ford L, McCabe M, Kaplan R, Smith M, Ungerlieder R, Christian MC: How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials. J Clin Oncol. 2002, 20: 2109-2117. 10.1200/JCO.2002.08.056.PubMed
8.
Sydor A: Conducting research into hidden or hard-to-reach populations. Nurse Res. 2013, 20 (3): 33-37. 10.7748/nr2013.01.20.3.33.c9495.PubMed
9.
10.
Marmot M, Friel S, Bell R, Houweling TAJ, Taylor S: Closing the gap in a generation: health equity through action on the social determinants of health. Lancet. 2008, 372: 1661-1669. 10.1016/S0140-6736(08)61690-6.PubMed
11.
Guyatt GH, Sackett DL, Sinclair JC, Haywood R, Cook DJ, Cook RJ: Evidence-Based Medicine Working Group. Users’ guide to the medical literature IX. A method for grading health care recommendations. JAMA. 1995, 274: 1800-1804. 10.1001/jama.1995.03530220066035.PubMed
12.
NHMRC: Guidelines for the Development and Implementation of Clinical Guidelines. 1995, Canberra: Australian Government Publishing Service
13.
Evans D: Hierarchy of evidence: a framework for ranking evidence evaluating healthcare interventions. J Clin Nurs. 2003, 12: 77-84. 10.1046/j.1365-2702.2003.00662.x.PubMed
14.
Hussain-Gambles M, Leese B, Atkin K, Brown J, Mason S, Tovey P: Involving South Asian patients in clinical trials. Health Technol Assess. 2004, 8 (42): 1-109.
15.
Hussain-Gambles M, Atkin K, Leese B: South Asian participation in clinical trials: the views of lay people and health professionals. Health Policy. 2006, 77: 149-165. 10.1016/j.healthpol.2005.07.022.PubMed
16.
Ashing-Giwa K, Rosales M: Recruitment and retention strategies of African American and Latina American breast cancer survivors in a longitudinal psychooncology study. Oncol Nurs Forum. 2012, 39 (5): e434-e442. 10.1188/12.ONF.E434-E442.PubMed
17.
Odierna DH, Schmidt LA: The effects of failing to include hard-to-reach respondents in longitudinal surveys. Am J Public Health. 2009, 99 (8): 1515-1520. 10.2105/AJPH.2007.111138.PubMedPubMedCentral
18.
Escobar-Chaves SL, Tortolero SR, Masse LC, Watson KB, Fulton JE: Recruiting and retaining minority women: findings from the Women On The Move study. Ethn Dis. 2002, 12: 242-251.PubMed
19.
Katz KS, Blake SM, Milligan RA, Sharps PW, White DB, Rodan MF, Rossi M, Murray KB: The design, implementation and acceptability of an integrated intervention to address multiple behavioural and psychosocial risk factors among pregnant African American women. BMC Pregnancy Childbirth. 2008, 8: 22-10.1186/1471-2393-8-22.PubMedPubMedCentral
20.
Rothschild SK, Martin MA, Swider SM, Lynas CT, Avery EF, Janssen I, Powell LH: The Mexican-American Trial of Community Health Workers (MATCH): design and baseline characteristics of a randomized controlled trial testing a culturally tailored community diabetes self-management intervention. Contemp Clin Trials. 2012, 33: 369-377. 10.1016/j.cct.2011.10.013.PubMed
21.
Martin MA, Swider SM, Olinger T, Avery E, Lynas CMT, Carlson K, Rothschild SK: Recruitment of Mexican American adults for an intensive diabetes intervention trial. Ethn Dis. 2011, 21 (1): 7-12.PubMedPubMedCentral
22.
El-Khorazaty MN, Johnson AA, Kiely M, El-Mohandes AAE, Subramanian S, Laryea HA, Murray KB, Thornberry JS, Joseph JG: Recruitment and retention of low-income minority women in a behavioural intervention to reduce smoking, depression, and intimate partner violence during pregnancy. BMC Public Health. 2007, 7: 233-10.1186/1471-2458-7-233.PubMedPubMedCentral
23.
Festinger DS, Marlowe DB, Croft JR, Dugosh KL, Mastro NK, Lee PA, DeMatteo DS, Patapis NS: Do research payments precipitate drug use or coerce participation?. Drug Alcohol Depend. 2005, 78: 275-281. 10.1016/j.drugalcdep.2004.11.011.PubMed
24.
Festinger DS, Marlowe DB, Dugosh KL, Croft JR, Arabia PL: Higher magnitude cash payments improve research follow-up rates without increasing drug use or perceived coercion. Drug Alcohol Depend. 2008, 96: 128-135. 10.1016/j.drugalcdep.2008.02.007.PubMedPubMedCentral
25.
Green MA, Kim MM, Barber S, Odulana AA, Godley PA, Howard DL, Corbie-Smith GM: Connecting communities to health research: development of the Project CONNECT minority research registry. Contemp Clin Trials. 2013, 35: 1-7.PubMedPubMedCentral
26.
Sutherland MA, Fantasia HC: Successful research recruitment strategies in a study focused on abused rural women at risk for sexually transmitted infections. J. Midwifery Womens Health. 2012, 57: 381-385. 10.1111/j.1542-2011.2011.00134.x.PubMed
27.
Goldade K, Whembolua G, Thomas J, Eischen S, Guo H, Connett J, Jarlais DD, Resnicow K, Gelberg L, Owen G, Grant J, Ahluwalia JS, Okuyemi KS: Designing a smoking cessation intervention for the unique needs of homeless persons: a community-based randomised clinical trial. Clin Trials. 2011, 8: 744-754. 10.1177/1740774511423947.PubMedPubMedCentral
28.
Germino BB, Mishel MH, Alexander R, Jenerette C, Blyler D, Baker C, Vines AI, Green M, Long DG: Engaging African American breast cancer survivors in an intervention trial: culture, responsiveness and community. J Cancer Surviv. 2011, 5: 82-91. 10.1007/s11764-010-0150-x.PubMed
29.
Fu SS, Rhodes KL, Robert C, Widome R, Forster JL, Joseph AM: Designing and evaluating culturally specific smoking cessation interventions for American Indian communities. Nicotine Tob Res. 2013, Advance Access, doi:10.1093/ntc/ntt111
30.
Webb DA, Coyne JC, Goldenberg RL, Hogan VK, Elo IT, Bloch JR, Mathew L, Bennett IM, Dennis EF, Culhane JF: Recruitment and retention of women in a large randomized control trial to reduce repeat preterm births: the Philadelphia Collaborative Preterm Prevention Project. BMC Med Res Methodol. 2010, 10: 88-10.1186/1471-2288-10-88.PubMedPubMedCentral
31.
Ammerman A, Washington C, Jackson B, Weathers B, Campbell M, Davis G, Garson-Angert D, Paige J, Parks-Bani C, Joyner M, Keyserling T, Switzer B: The Praise! Project: a church-based nutrition intervention designed for cultural appropriateness, sustainability and diffusion. Health Promot Pract. 2002, 3: 286-301.
32.
McCaskill-Stevens W, Pinto H, Comis R, Morgan R, Plomer K, Schoentgen S: Recruiting minority cancer patients into cancer clinical trials: a pilot project involving the Eastern cooperative oncology group and the National Medical Association. J Clin Oncol. 1999, 17 (3): 1029-1039.PubMed
33.
Daniulaityte R, Falck R, Li L, Nahhas RW, Carlson RG: Respondent-driven sampling to recruit young adult non-medical users of pharmaceutical opioids: Problem and solutions. Drug Alcohol Depend. 2012, 121: 23-29. 10.1016/j.drugalcdep.2011.08.005.PubMed
34.
Peterson JA, Reisinger HS, Schwartz RP, Mitchell SG, Kelly SM, Brown BS, Agar MH: Targeted sampling in drug abuse research: a review and case study. Field Meth. 2008, 20: 155-170. 10.1177/1525822X08314988.
35.
Morse EV, Simon PM, Besch L, Walker J: Issues of recruitment, retention and compliance in community-based clinical trials with traditionally underserved populations. Appl Nurs Res. 1995, 8 (1): 8-14. 10.1016/S0897-1897(95)80240-1.PubMed
36.
Napoles-Springer AM, Fongwa MN, Stewart AL, Gildengorin G, Perez-Stable EJ: The effectiveness of an advance notice letter on the recruitment of African Americans and Whites for a mailed patient satisfaction survey. J Aging Health. 2004, 16: S124-S136. 10.1177/0898264304269724.
37.
Nicholson RA, Kreuter MW, Lapka C, Wellborn R, Clark EM, Sanders-Thompson V, Jacobsen HM, Casey C: Unintended effects of emphasizing disparities in cancer communication to African-Americans. Canc Epidemiol Biomarkers Prev. 2008, 17: 2946-2953. 10.1158/1055-9965.EPI-08-0101.
38.
Stueve A, O’Donnell LN, Duran R, Doval AS, Blome J: Time-space sampling in minority communities: Results with young Latino men who have sex with men. J Public Health. 2001, 91 (6): 922-926.
39.
McCuller WJ, Sussman S, Holiday K, Craig S, Dent CW: Tracking procedures for locating high-risk youth. Eval Health Prof. 2002, 25: 345-362. 10.1177/0163278702025003006.PubMed
40.
Hough RL, Tarke H, Renker V, Shields P, Glatstein J: Recruitment and retention of homeless mentally ill participants in research. J Consult Clin Psychol. 1996, 64 (5): 881-891.PubMed
41.
Harris KJ, Ahluwalia JS, Catley D, Okuyemi KS, Mayo MS, Resnicow K: Successful recruitment of minorities into clinical trials: the Kick It at Swope project. Nicotine Tob Res. 2003, 5 (4): 575-584. 10.1080/1462220031000118540.PubMed
42.
Maxwell AE, Bastani R, Glenn BA, Mojica CM, Chang C: An experimental test of the effect of incentives on recruitment of ethnically diverse colorectal cancer cases and their first-degree relatives into a research study. Canc Epidemiol Biomarkers Prev. 2009, 18 (10): 2620-2625. 10.1158/1055-9965.EPI-09-0299.
43.
Satia JA, Galanko JA, Rimer BK: Methods and strategies to recruit African Americans into cancer prevention surveillance studies. Canc Epidemiol Biomarkers Prev. 2005, 14: 718-721. 10.1158/1055-9965.EPI-04-0132.
44.
Derose KP, Hawes-Dawson J, Fox SA, Maldonado N, Tatum A, Kingyon R: Dealing with diversity: recruiting churches and women for a randomized trial of mammography promotion. Health Educ Behav. 2000, 27: 632-648. 10.1177/109019810002700508.PubMed
45.
Sudore RL, Landefeld S, Williams BA, Barnes DE, Lindquist K, Schillinger D: Use of a modified informed consent process among vulnerable patients. A descriptive study. J Gen Intern Med. 2006, 21: 867-873. 10.1111/j.1525-1497.2006.00535.x.PubMedPubMedCentral
46.
Hendrickson SG: Video recruitment of non-English speaking participants. West J Nurs Res. 2007, 29: 232-242. 10.1177/0193945906292558.PubMed
47.
Hatchett BF, Holmes K, Duran DA, Davis C: African Americans and research participation: The recruitment process. J Black Stud. 2000, 30: 664-674. 10.1177/002193470003000502.
48.
Hahn EA, Cella D: Health outcomes assessment in vulnerable populations: measurement challenges and recommendations. Arch Phys Med Rehabil. 2003, 84 (S2): 35-42.
49.
Shebl F, Poppell CF, Zhan M, Dwyer DM, Hopkins AB, Groves C, Reed F, Devadason C, Steinberger EK: Measuring health behaviours and landline telephones: potential coverage bias in a low-income rural population. Public Health Rep. 2009, 124 (4): 495-502.PubMedPubMedCentral
50.
Adams-Campbell LL, Ahaghotu C, Gaskins M, Dawkins FW, Smoot D, Polk OD, Gooding R, Dewitty RL: Enrolment of African Americans onto clinical treatment trials: study design barriers. J Clin Oncol. 2004, 22: 730-734. 10.1200/JCO.2004.03.160.PubMed
51.
Mathy RM, Schillace M, Coleman SM, Berquist BE: Methodological rigor with internet samples: new ways to reach underrepresented populations. Cyberpsychol Behav. 2002, 5 (3): 253-266. 10.1089/109493102760147259.PubMed
52.
Chang BL, Bakken S, Brown S, Houston TK, Kreps GL, Kukafka R, Safran C, Stavri Z: Bridging the digital divide: reaching vulnerable populations. J Am Med Inform Assoc. 2004, 11: 448-457. 10.1197/jamia.M1535.PubMedPubMedCentral
53.
Martsolf DS, Courey TJ, Chapman TR, Drauker CB, Mims BL: Adaptive sampling: recruiting a diverse community sample of survivors of sexual violence. J Community Health Nurs. 2006, 23 (3): 169-182. 10.1207/s15327655jchn2303_4.PubMed
54.
Signorello LB, Hargreaves MK, Steinwandel MD, Zheng W, Cai Q, Schlundt DG, Buchowski MS, Arnold CW, McLaughlin JK, Blot WJ: Southern community cohort study: establishing a cohort to investigate health disparities. J Natl Med Assoc. 2005, 97 (7): 972-978.PubMedPubMedCentral
55.
Harper GW, Carver LJ: “Out-of-the-Mainstream” Youth Partners in Collaborative research: exploring the benefits and challenges. Health Educ Behav. 1999, 26: 250-265. 10.1177/109019819902600208.PubMed
56.
Han H, Kang J, Kim K, Ryu J, Kim M: Barriers to and strategies for recruiting Korean Americans for community-partnered health promotion research. J Immigr Minor Health. 2007, 9: 137-146. 10.1007/s10903-006-9022-x.PubMed
57.
Sadler GR, Lee H, Lim RS, Fullerton J: Recruiting hard-to-reach United States population sub-groups via adaptations of snowball sampling strategy. Nurs Health Sci. 2010, 12 (3): 369-374. 10.1111/j.1442-2018.2010.00541.x.PubMedPubMedCentral
58.
Lacey L, Tukes S, Manfredi C, Warnecke RB: Use of lay health educators for smoking cessation in a hard-to-reach urban community. J Community Health. 1991, 16 (5): 269-281. 10.1007/BF01320335.PubMed
59.
Alemagno SA, Cochran D, Feucht TE, Stephens RC, Butts JM, Wolfe SA: Assessing substance abuse treatment needs among the homeless: a telephone-based interactive voice response system. Am J Public Health. 1996, 86: 1626-1628. 10.2105/AJPH.86.11.1626.
60.
Shedlin MG, Decena CU, Mangadu T, Martinez A: Research participant recruitment in Hispanic communities: lessons learned. J Immigr Minor Health. 2011, 13: 352-360. 10.1007/s10903-009-9292-1.PubMed
61.
Graham AL, Lopez-Class M, Mueller NT, Mota G, Mandelblatt J: Efficiency and costeffectiveness of recruitment methods for male Latino smokers. Health Educ Behav. 2011, 38 (3): 293-300. 10.1177/1090198110372879.PubMedPubMedCentral
62.
Keyzer JF, Melnikow J, Kuppermann M, Birch S, Kuenneth C, Nuovo J, Azari R, Oto-Kent D, Rooney M: Recruitment strategies for minority participation: challenges and cost lessons from the POWER interview. Ethn Dis. 2005, 15: 395-406.PubMed
63.
McGraw SA, McKinlay JB, Crawford SL, Costa LA, Cohen DL: Health survey methods with minority populations: some lessons from recent experience. Ethn Dis. 1992, 2 (3): 273-287.PubMed
64.
Newman PA, Duan N, Roberts KJ, Seiden D, Rudy ET, Swendeman D, Popova S: HIV vaccine trial participation among ethnic minority communities; Barriers, Motivators and Implications for recruitment. J Acquir Immune Defic Syndr. 2006, 41: 210-217. 10.1097/01.qai.0000179454.93443.60.PubMed
65.
Maher JE, Pranian K, Drach L, Rumptz M, Casciato C, Guernsey J: Using text messaging to contact difficult-to-reach study participants. Am J Public Health. 2010, 100 (6): 969-970. 10.2105/AJPH.2009.188391.PubMedPubMedCentral
66.
Meyers K, Webb A, Frantz J, Randall M: What does it take to retain substanceabusing adolescents in research protocols? Delineation of effort required, strategies undertaken, costs incurred, and 6-month post-treatment differences by retention difficulty. Drug Alcohol Depend. 2003, 69: 73-85. 10.1016/S0376-8716(02)00252-1.PubMed
67.
Alvarez RA, Vasquez E, Mayorga CC, Feaster DJ, Mitrani VB: Increasing minority research participation through community organisation outreach. West J Nurs Res. 2006, 28 (5): 541-563. 10.1177/0193945906287215.PubMedPubMedCentral
68.
Atkinson NL, Billing AS, Desmond SM, Gold RS, Tournas-Hardt A: Assessment of the nutrition and physical activity education needs of low-income, rural mothers: can technology play a role?. J Community Health. 2007, 32 (4): 245-267. 10.1007/s10900-007-9047-7.PubMed
69.
Atkinson NL, Saperstein SL, Desmond SM, Gold RS, Billing AS, Tian J: Rural ehealth nutrition education for limited-income families: an iterative and user-centred design approach. J Med Internet Res. 2009, 11 (2): e21-10.2196/jmir.1148.PubMedPubMedCentral
70.
Burns D, Soward ACM, Skelly AH, Leeman J, Carlson J: Effective recruitment and retention strategies for older members of rural minorities. Diabetes Educ. 2008, 34: 1045-1051. 10.1177/0145721708325764.PubMed
71.
Loftin WA, Barnett SK, Bunn PS, Sullivan P: Recruitment and retention of rural African Americans in Diabetes Research: Lessons Learned. Diabetes Educ. 2005, 31: 251-259. 10.1177/0145721705275517.PubMed
72.
Brown DR, Fouad MN, Basen-Engquist K, Tortolero-Luna G: Recruitment and retention of minority women in cancer screening, prevention and treatment trials. Ann Epidemiol. 2000, 10: S13-S21. 10.1016/S1047-2797(00)00197-6.PubMed
73.
Woods MN, Harris KJ, Mayo MS, Catley D, Scheibmeir M, Ahluwalia JS: Participation of African Americans in a smoking cessation trial: a quantitative and qualitative study. JAMA. 2002, 94 (7): 609-618.
74.
Leach CR, Schoenberg NE, Hatcher J: Factors associated with participation in cancer prevention and control studies among rural Appalachian women. Fam Community Health. 2011, 34 (2): 119-125.PubMedPubMedCentral
75.
Blumenthal DS, Sung J, Coates R, Williams J, Liff J: Recruitment and retention of subjects for a longitudinal cancer prevention study in an inner-city black community. Health Serv Res. 1995, 30 (1): 197-205.PubMedPubMedCentral
76.
Brown-Peterside P, Rivera E, Lucy D, Slaughter I, Ren L, Chiasson MA, Koblin BA: Retaining hard-to-reach women in HIV prevention and vaccine trials: project ACHIEVE. Am J Public Health. 2001, 91 (9): 1377-1379. 10.2105/AJPH.91.9.1377.PubMedPubMedCentral
77.
Chen AM, Wismer BA, Lew R, Hang SH, Min K, Moscowitz JM, Tager IB: “Health is Strength”: a research collaboration involving Korean Americans in Alameda County. Am J Prev Med. 1997, 13 (S6): 93-100.PubMed
78.
Israel BA, Krieger J, Vlahov D, Ciske S, Foley M, Fortin P, Guzman RJ, Lichtenstein R, McGranaghan R, Palermo A, Tang G: Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit New York City and Seattle Urban Research Centres. Bull New York Acad Med. 2006, 83 (6): 1022-1040.
79.
Robinson WT, Risser JMH, McGoy S, Becker AB, Rehman H, Jefferson , Griffin V, Wolverton M, Tortu S: Recruiting injection drug users: a three site comparison of results and experiences with respondent-driven and targeted sampling procedures. J Urban Health Bull New York Acad Med. 2006, 83 (7): i29-i38.
80.
Lindenberg CS, Solorzano RM, Vilaro FM, Westbrook LO: Challenges and strategies for conducting intervention research with culturally diverse populations. J Transcult Nurs. 2001, 12: 132-139. 10.1177/104365960101200207.PubMed
81.
Faseru B, Cox LS, Bronars CA, Opole I, Reed GA, Mayo MS, Ahluwalia JS, Okuyemi KS: Design, recruitment, and retention of African-American smokers in a pharmacokinetic study. BMC Med Res Methodol. 2010, 10: 6-10.1186/1471-2288-10-6.PubMedPubMedCentral
82.
Hughes JJ: Paying injection drug users to educate and recruit their peers: Why participant-driven interventions are an ethical public health model. Qual Manag Health Care. 1999, 7 (4): 4-12. 10.1097/00019514-199907040-00004.PubMed
83.
Grov C, Bux D, Parsons JT, Morgenstern J: Recruiting hard-to-reach drug-using men who have sex with men into an intervention study: lessons learned and implications for applied research. Subst Use Misuse. 2009, 44: 1855-1871. 10.3109/10826080802501570.PubMedPubMedCentral
84.
Goel S, Salganik MJ: Assessing respondent-driven sampling. Proc Natl Acad Sci U S A. 2010, 107 (15): 6743-6747. 10.1073/pnas.1000261107.PubMedPubMedCentral
85.
Eakin EG, Bull SS, Riley K, Reeves M, Gutierrez S, McLaughlin P: Recruitment and retention of Latinos in a primary care-based physical activity and diet trial: the Resources for Health study. Health Educ Res. 2006, 22 (3): 361-371. 10.1093/her/cyl095.PubMed
86.
Cortes DE, Drainoni M-L, Henault LE, Paasche-Orlow MK: How to achieve informed consent for research from Spanish-speaking individuals with low literacy: a qualitative report. J Health Commun. 2010, 15 (S2): 172-182.PubMed
87.
Clayman ML, Mangello JA, Viswanath K, Hesse BW, Arora NK: Providing health messages to Hispanics/Latinos: understanding the importance of language, trust in health information sources, and media use. J Health Commun. 2010, 15 (S3): 252-263.PubMedPubMedCentral
88.
Befort CA, Donnelly JE, Sullivan DK, Ellerbeck EF, Perri MG: Group versus individual phone-based obesity treatment for rural women. Eat Behav. 2010, 11: 11-17. 10.1016/j.eatbeh.2009.08.002.PubMed
89.
Robinson JM, Trochim WMK: An examination of community members’, researchers’ and health professionals’ perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethn Health. 2007, 12 (5): 521-539. 10.1080/13557850701616987.PubMed
90.
Ngo-Metzer Q, Kaplan S, Sorkin DH, Claridge BR, Phillips RS: Surveying minorities with limited-English proficiency. Does data collection method affect data quality among Asian Americans?. Med Care. 2004, 42 (9): 893-900. 10.1097/01.mlr.0000135819.15178.bc.
91.
Kalsbeek WD: Sampling minority groups in health surveys. Stat Med. 2003, 22: 1527-1549. 10.1002/sim.1510.PubMed
92.
Rooney LK, Bhopal R, Halani L, Levy ML, Partridge MR, Netuveli G, Car J, Griffiths C, Atkinson J, Lindsay G, Sheikh A: Promoting recruitment of minority ethnic groups into research: qualitative study exploring the views of South Asian people with asthma. J Public Health. 2011, 33 (4): 604-615. 10.1093/pubmed/fdq100.
93.
Rugkasa J, Canvin K: Researching mental health in minority ethnic communities: reflections on recruitment. Qual Health Res. 2011, 21: 132-10.1177/1049732310379115.PubMed
94.
Stirland L, Halani L, Raj B, Netuveli G, Partridge M, Car J, Griffiths C, Levy M, Sheikh A: Recruitment of South Asians into asthma research: qualitative study of UK and US researchers. Prim Care Respir J. 2011, 20 (3): 282-290. 10.4104/pcrj.2011.00032.PubMed
95.
Bloor M: Population estimation without censuses or surveys: a discussion of markrecapture methods illustrated by results from three studies. Sociology. 2005, 39: 121-138.
96.
McMillan B, Green JM, Woolridge MW, Dyson L, Renfrew MJ, Clarke GP: Studying the infant feeding intentions of pregnant women experiencing material deprivation: Methodology of the Looking at Infant Feeding Today (LIFT) study. Soc Sci Med. 2009, 68: 845-849. 10.1016/j.socscimed.2008.12.032.PubMed
97.
Dowrick C, Gask L, Edwards S, Aseem S, Bower P, Burroughs H, Catlin A, Chew-Graham C, Clarke P, Gabbay M, Gowers S, Hibbert D, Kovandzic M, Lamb J, Lovell K, Rogers A, Lloyd-Williams M, Waheed W: Researching the mental health needs of hard-to-reach groups: Managing multiple sources of data. BMC Health Serv Res. 2009, 9: 226-10.1186/1472-6963-9-226.PubMedPubMedCentral
98.
Elliot E, Watson AJ, Harries U: Harnessing expertise: involving peer interviewers in qualitative research with hard-to-reach populations. Health Expect. 2002, 5: 172-178. 10.1046/j.1369-6513.2002.00158.x.
99.
Kiezebrink K, Crombie IK, Irvine L, Swanson V, Power K, Wrieden WL, Slane PW: Strategies for achieving a high response rate in a home interview survey. BMC Med Res Methodol. 2009, 9: 46-10.1186/1471-2288-9-46.PubMedPubMedCentral
100.
Anderson M, Solarin I, Gerver S, Elam G, MacFarlane E, Fenton K, Easterbrook P: The LIVITY study: research challenges and strategies for engaging with black Caribbean community in a study of HIV infection. Int J Soc Res Methodol. 2009, 12 (3): 197-209. 10.1080/13645570701708584.
101.
Sheikh A, Halani L, Bhopal R, Netuveli G, Partridge MR, Car J, Griffiths C, Levy M: Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma. PLoS Med. 2009, 6 (10): e1000148-10.1371/journal.pmed.1000148.PubMedPubMedCentral
102.
Browne K: Snowball sampling: using social networks to research nonheterosexual women. Int J Soc Res Methodol. 2007, 8 (1): 47-60.
103.
Hoppitt T, Shah S, Bradburn P, Gill P, Calvert M, Pall H, Stewart M, Fazil Q, Sackley C: Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurologic conditions. Int J Soc Res Methodol. 2012, 15 (6): 485-495. 10.1080/17522439.2011.615161.
104.
Hughes AO, Fenton S, Hine CE, Pilgrim S, Tibbs N: Strategies for sampling black and ethnic minority populations. J Publ Health Med. 1995, 17 (2): 187-192.
105.
Ryan L, Kofman E, Aaron P: Insiders and outsiders: working with peer researchers in researching Muslim communities. Int J Soc Res Methodol. 2011, 14 (1): 49-60. 10.1080/13645579.2010.481835.
106.
Choudhury Y, Hussain I, Parsons S, Rahman A, Eldridge S, Underwood M: Methodological challenges and approaches to improving response rates in population surveys in areas of extreme deprivation. Prim Health Care Res Dev. 2012, 13: 211-218. 10.1017/S1463423611000466.PubMed
107.
Greenhalgh T, Collard A, Begum N: Sharing stories: complex intervention for diabetes education in minority ethnic groups who do not speak English. BMJ. 2005, 330: 1-6. 10.1136/bmj.330.7481.1.
108.
Chiu LF, West RM: Health intervention in social context: Understanding social networks and neighbourhood. Soc Sci Med. 2007, 65: 1915-1927. 10.1016/j.socscimed.2007.05.035.PubMed
109.
McLean CA, Campbell CM: Locating research informants in a multi-ethnic community: ethnic identities, social networks and recruitment methods. Ethn Health. 2003, 8 (1): 41-61. 10.1080/13557850303558.PubMed
110.
Allison T, Ahmad T, Brammah T, Symmons D, Urwin M: Can findings from postal questionnaires be combined with interview results to improve the response rate among ethnic minority populations?. Ethn Health. 2003, 8 (1): 63-69. 10.1080/13557850303552.PubMed
111.
Elam G, Fenton KA: Researching sensitive issues and ethnicity: lessons from sexual health. Ethn Health. 2003, 8 (1): 15-27. 10.1080/13557850303557.PubMed
112.
Oakley A, Wiggins M, Turner H, Rajan L, Barker M: Including culturally diverse samples in health research: a case study of an urban trial of social support. Ethn Health. 2003, 8 (1): 29-39. 10.1080/13557850303554.PubMed
113.
Fox S, Arnold A, Dunn R, Keeffe J, Taylor H: Sampling and recruitment methodology for a national eye health survey of Indigenous Australians. Aust New Zeal J Publ Health. 2010, 34: 554-562. 10.1111/j.1753-6405.2010.00635.x.
114.
Couzos S, Lea T, Murray R, Culbong M: “We are not just participants – We are in charge”: the NACCHO Ear Trial and the process for Aboriginal communitycontrolled Health Research. Ethn Health. 2005, 10 (2): 91-111. 10.1080/13557850500071038.PubMed
115.
Hing N, Breen H, Gordon A: Respecting cultural values: conducting a gambling survey in an Australian Indigenous community. Aust New Zeal J Publ Health. 2010, 34: 547-553. 10.1111/j.1753-6405.2010.00624.x.
116.
Lennox N, Taylor M, Rey-Conde T: Beating the barriers: recruitment of people with intellectual disability to participate in research. J Intellect Disabil Res. 2005, 49 (4): 296-305. 10.1111/j.1365-2788.2005.00618.x.PubMed
117.
Thomas D, Fitz JW, Johnston V, Townsend J, Kneebone W: Wholesale data surveillance of Australian Aboriginal tobacco consumption in the Northern Territory. Tob Control. 2011, 20: 291-295. 10.1136/tc.2010.042473.PubMed
118.
Isaacs AN, Pepper H, Pyett P, Gruis HA, Waples-Crowe P, Oakley-Browne MA: What you do is important but how you do it is more important. Engaging Indigenous men in rural mental health services research. Qual Res J. 2011, 11 (1): 51-61. 10.3316/QRJ1101051.
119.
Cleland V, Ball K: Recruiting hard-to-reach populations: lessons from a study of women living in socioeconomically disadvantaged areas of Victoria, Australia. Health Promot J Austr. 2010, 21 (3): 243-244.PubMed
120.
Bryant J, Bonevski B, Paul C, Lecathelinais C: Assessing smoking status in disadvantaged populations: is computer administered self-report an accurate and acceptable measure?. BMC Med Res Methodol. 2011, 11: 153-10.1186/1471-2288-11-153.PubMedPubMedCentral
121.
Kelly J, Saggers S, Taylor K, Pearce G, Massey P, Bull J, Odo T, Thomas J, Billycan R, Judd J, Reilly S, Ahboo S: “Makes you proud to be black, eh?”: Reflections on meaningful Indigenous research participation. Int J Equity Health. 2012, 11: 40-10.1186/1475-9276-11-40.PubMedPubMedCentral
122.
Benoit C, Jansson M, Millar A, Philips R: Community-academic research on hardto-reach populations: benefits and challenges. Qual Health Res. 2005, 15: 263-282. 10.1177/1049732304267752.PubMed
123.
Furimsky I, Cheung AH, Dewa CS, Zipursky RB: Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness. Contemp Clin Trials. 2008, 29: 862-866. 10.1016/j.cct.2008.07.005.PubMed
124.
Greene S, Ahluwalia A, Watson J, Tucker R, Rourke SB, Koornstra J, Sobota M, Monette L, Byers S: Between scepticism and empowerment: the experiences of peer research assistants in HIV/AIDS, housing and homelessness community-based research. Int J Soc Res Methodol. 2009, 12 (4): 361-373. 10.1080/13645570802553780.
125.
Wong ST, Bowell B, Housden L, Lavoi J: Strategies for moving towards equity in recruitment of rural and Aboriginal research participants. Rural Remote Health. 2013, 13: 2453-PubMed
126.
Platt L, Wall M, Rhodes T, Judd A, Hickman M, Johnston LG, Renton A, Bobrova N, Sarang A: Methods to recruit hard-to-reach groups: comparing two chain referral sampling methods of recruiting injecting drug users across nine studies in Russia and Estonia. J Urban Health Bull New York Acad Med. 2006, 83 (7): i39-i53.
127.
Dingoyan D, Schulz H, Mosko M: The willingness to participate in health research studies of individuals with Turkish migration backgrounds: barriers and resources. Eur Psychiatry. 2012, 27 (S2): S4-S9.PubMed
128.
Mhurchu CN, Blakely T, Funaki-Tahifote M, McKerchar C, Wilton J, Chua S, Jiang Y: Inclusion of indigenous and ethnic minority populations in intervention trials: challenges and strategies in a New Zealand supermarket study. J Epidemiol Community. 2009, 63: 850-855. 10.1136/jech.2008.081109.
129.
Abramovitz D, Volz EM, Strathdee SA, Patterson TL, Vera A, Frost SDW: Using respondent driven sampling in a hidden population at risk of HIV infection: Who do HIV-positive recruiters recruit?. Sex Transm Dis. 2009, 36 (12): 750-756. 10.1097/OLQ.0b013e3181b0f311.PubMedPubMedCentral
130.
Sheridan SL, Halpern DJ, Viera AJ, Berkman ND, Donahue KE, Crotty K: Interventions for individuals with low health literacy: a systematic review. J Health Commun Int Perspect. 2011, 16 (S3): 30-54.
131.
Swanson GM, Ward AJ: Recruiting minorities into clinical trials: toward a participant-friendly system. J Natl Cancer Inst. 1995, 87 (23): 1747-1759. 10.1093/jnci/87.23.1747.PubMed
132.
Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, Tilburt J, Baffi C, Tanpitukpongse TP, Wilson R, Powe NR, Bass EB: Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer. 2008, 112: 228-242. 10.1002/cncr.23157.PubMed
133.
Hergenrather KC, Rhodes SD, Cowan CA, Bardhoshi G, Pula S: Photovoice as a community-based participatory research: a qualitative review. Am J Health Behav. 2009, 33 (6): 686-698.PubMed
134.
Halcomb EJ, Gholizadeh L, DiGiacomo M, Philips J, Davidson P: Literature review: considerations in undertaking focs group research with culturally and linguistically diverse groups. J Clin Nurs. 2007, doi: 10.1111/j.1365-2702.23006.01760.x
135.
Grove N, Brough M, Canuto C, Dobson A: Aboriginal and Torres Strait Islander health research and the conduct of longitudinal studies: issues for debate. Aust New Zeal J Publ Health. 2003, 27 (6): 637-641. 10.1111/j.1467-842X.2003.tb00612.x.
136.
Booth S: Researching health and homelessness: methodological challenges for researchers working with a vulnerable, hard-to-reach, transient population. Aust J Prim Health Interchange. 1999, 5 (3): 76-81. 10.1071/PY99037.
137.
Mathews J, Cramer EP: Using technology to enhance qualitative research with hidden populations. Qual Rep. 2008, 13 (2): 301-315.
138.
Andresen EM, Diehr PH, Luke DA: Public Health Surveillance of low-frequency populations. Annu Rev Publ Health. 2004, 25: 25-52. 10.1146/annurev.publhealth.25.101802.123111.
139.
Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC: Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health. 1997, 2 (1–2): 31-45.PubMed
140.
Flory J, Ezekiel E: Interventions to improve research participants’ understanding in informed consent for research: a systematic review. JAMA. 2004, 292 (13): 1593-1601. 10.1001/jama.292.13.1593.PubMed
141.
UyBico SJ, Pavel S, Gross CP: Recruiting vulnerable populations into research: a systematic review of recruitment interventions. J Gen Intern Med. 2007, 22: 852-863. 10.1007/s11606-007-0126-3.PubMedPubMedCentral
142.
Lai GY, Gary TL, Tilburt J, Bolen S, Baffi C, Wilson RF, Howerton MW, Gibbons MC, Tanpitukpongse TP, Powe NR, Bass EB, Ford JG: Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials. Clin Trials. 2006, 3: 133-141. 10.1191/1740774506cn143oa.PubMed
143.
Howerton MW, Gibbons MC, Baffi CR, Gary TL, Lai GY, Bolen S, Tilburt J, Tanpitukpongse TP, Wilson RF, Powe N, Bass EB, Ford JG: Provider roles in the recruitment of underrepresented populations to cancer clinical trials. Cancer. 2007, 109: 465-476. 10.1002/cncr.22436.PubMed
144.
Giuliano AR, Mokuau N, Hughes C, Tortolero-Luna G, Risendal B, Ho RCS, Prewitt TE, McKaskill-Stevens WJ: Participation of minorities in cancer research: the influence of structural, cultural and linguistic factors. AEP. 2000, 10 (S8): S22-S34.PubMed
145.
Miranda J, Azocar F, Organista KC, Munoz RE, Lieberman A: Recruiting and retaining low-income Latinos in psychotherapy research. J Consult Clin Psychol. 1996, 64 (5): 868-874.PubMed
146.
Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, Brawley OW, Gross CP, Emanuel E: Are racial and ethnic minorities less willing to participate in health research?. Plos Med. 2006, 3 (2): e19-10.1371/journal.pmed.0030019. doi: 10.1371/journal.pmed.0030019PubMed
147.
Dhalla S, Poole G: Motivators of enrolment in HIV vaccine trials: a review of HIV vaccine preparedness studies. AIDS Care. 2011, 23 (11): 1430-1447. 10.1080/09540121.2011.555750.PubMed
148.
Yancey AK, Ortega AN, Kumanyika SK: Effective recruitment and retention of minority research participants. Annu Rev Publ Health. 2006, 27: 1-28. 10.1146/annurev.publhealth.27.021405.102113.
149.
Kalton G: Methods for oversampling rare subpopulations in social surveys. Surv Meth. 2009, 35 (2): 125-141.
150.
Atkinson R, Flint J: Accessing hidden and hard-to-reach populations: snowball research strategies. Soc Res Update. 2001, 33 (1): 1-4.
151.
Malekinejad M, Johnston LG, Kendall C, Kerr LRFS, Rifkin MR, Rutherford GW: Using respondent-driven sampling methodology for HIV biological and behavioural surveillance in international settings: a systematic review. AIDS Behav. 2008, 12: S105-S130. 10.1007/s10461-008-9421-1.PubMed
152.
Marpsat M, Razafindratsima N: Survey methods for hard-to-reach populations: introduction to the special issue. Methodol Innov Online. 2010, 5 (2): 3-16.
153.
Aldana BU, Quintero MA: A comparison of three methods for sampling hard-toreach or hidden populations. Pensamiento Psicologico. 2008, 4 (10): 167-176.
154.
Faugier J, Sargeant M: Sampling hard to reach populations. J Adv Nurs. 1997, 26: 790-797. 10.1046/j.1365-2648.1997.00371.x.PubMed
155.
Johnson VA, Powell-Young YM, Torres ER, Spruill IJ: A systematic review of strategies that increase the recruitment and retention of African American Adults in genetic and genomic studies. ABNF J. 2011, 22 (4): 84-88.PubMedPubMedCentral
156.
Ndumele CD, Ableman G, Russell BE, Gurrola E, Hicks LS: Publication of recruitment methods in focus group research of minority populations with chronic disease: a systematic review. J Health Care Poor Underserved. 2011, 22 (1): 5-23.PubMed
157.
Glazier RH, Bajcar J, Kennie NR, Willson K: A systematic review of interventions to improve diabetes care in socially disadvantaged populations. Diabetes Care. 2006, 29: 1675-1688. 10.2337/dc05-1942.PubMed
158.
Wallace DC, Bartlett R: Recruitment and retention of African American and Hispanic girls and women in research. Public Health Nurs. 2012, 30 (2): 159-166.PubMedPubMedCentral
159.
National Health and Medical Research Council: Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. 2003, Canberra: Commonwealth of Australia
160.
Leeman J, Harrell JS, Funk SG: Building a research program focussed on vulnerable people. West J Nurs Res. 2002, 24: 103-111. 10.1177/01939450222045743.PubMed
161.
Sanson-Fisher R, Brand M, Shakeshaft A, Haber P, Day C, Conigrave K, Mattick R, Lintzeris N, Teesson M: Forming a national multicentre collaboration to conduct clinical trials: increasing high-quality research in the drug and alcohol field. Drug Alcohol Rev. 2010, 29: 469-474. 10.1111/j.1465-3362.2009.00166.x.PubMed
162.
Caldwell PHY, Hamilton S, Tan A, Craig JC: Strategies for increasing recruitment to randomised controlled trials: systematic review. PLoS Med. 2010, 7 (11): e1000368-10.1371/journal.pmed.1000368.PubMedPubMedCentral
163.
Popay J: Should disadvantaged people be paid to take care of their health? No. BMJ. 2008, 337: a594-10.1136/bmj.a594.PubMed
164.
165.
Eakin EG, Bull SS, Glasgow RE, Mason M: Reaching those most in need: a review of diabetes self-management interventions in disadvantaged populations. Diabetes Metab Res Rev. 2002, 18: 26-35. 10.1002/dmrr.266.PubMed
166.
Tudor-Hart J: Semicontinuous screening of a whole community for hypertension. Lancet. 1970, 2: 223-227.
167.
Metadata
Title
Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups
Authors
Billie Bonevski
Madeleine Randell
Chris Paul
Kathy Chapman
Laura Twyman
Jamie Bryant
Irena Brozek
Clare Hughes
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2014
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/1471-2288-14-42

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