期刊论文详细信息
BMC Medical Research Methodology
Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups
Clare Hughes2  Irena Brozek2  Jamie Bryant4  Laura Twyman1  Kathy Chapman2  Chris Paul4  Madeleine Randell1  Billie Bonevski3 
[1] School of Medicine & Public Health, Faculty of Health & Medicine, University of Newcastle, Callaghan, NSW, Australia;Cancer Council NSW, 153 Dowling Street, Woolloomooloo, Sydney, NSW, Australia;School of Medicine & Public Health, Calvary Mater Hospital, University of Newcastle, Level 5, McAuley Building, Callaghan 2308, NSW, Australia;Health Behaviour Research Group, Priority Research Centre for Health Behaviour, Faculty of Health & Medicine, University of Newcastle, Callaghan, NSW, Australia
关键词: Vulnerable groups;    Medical research;    Systematic review;   
Others  :  866378
DOI  :  10.1186/1471-2288-14-42
 received in 2013-09-30, accepted in 2014-03-20,  发布年份 2014
PDF
【 摘 要 】

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.

【 授权许可】

   
2014 Bonevski et al.; licensee BioMed Central Ltd.

【 预 览 】
附件列表
Files Size Format View
20140727071957397.pdf 687KB PDF download
44KB Image download
【 图 表 】

【 参考文献 】
  • [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.
  • [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. doi: 10.1136/jme.2003.007062
  • [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.
  • [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.
  • [8]Sydor A: Conducting research into hidden or hard-to-reach populations. Nurse Res 2013, 20(3):33-37.
  • [9]Lambert EY, Wiebel WW (Eds): The Collection and Interpretation of Data from Hidden Populations. Washington, DC: United States National Institute on Drug Abuse; 1990. from http://www.drugabuse.gov/pdf/monographs/download98.html webcite
  • [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.
  • [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.
  • [12]NHMRC: Guidelines for the Development and Implementation of Clinical Guidelines. Canberra: Australian Government Publishing Service; 1995.
  • [13]Evans D: Hierarchy of evidence: a framework for ranking evidence evaluating healthcare interventions. J Clin Nurs 2003, 12:77-84.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [46]Hendrickson SG: Video recruitment of non-English speaking participants. West J Nurs Res 2007, 29:232-242.
  • [47]Hatchett BF, Holmes K, Duran DA, Davis C: African Americans and research participation: The recruitment process. J Black Stud 2000, 30:664-674.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [84]Goel S, Salganik MJ: Assessing respondent-driven sampling. Proc Natl Acad Sci U S A 2010, 107(15):6743-6747.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [91]Kalsbeek WD: Sampling minority groups in health surveys. Stat Med 2003, 22:1527-1549.
  • [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.
  • [93]Rugkasa J, Canvin K: Researching mental health in minority ethnic communities: reflections on recruitment. Qual Health Res 2011, 21:132.
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [108]Chiu LF, West RM: Health intervention in social context: Understanding social networks and neighbourhood. Soc Sci Med 2007, 65:1915-1927.
  • [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.
  • [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.
  • [111]Elam G, Fenton KA: Researching sensitive issues and ethnicity: lessons from sexual health. Ethn Health 2003, 8(1):15-27.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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. BioMed Central Full Text
  • [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. BioMed Central Full Text
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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. doi: 10.1371/journal.pmed.0030019
  • [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.
  • [148]Yancey AK, Ortega AN, Kumanyika SK: Effective recruitment and retention of minority research participants. Annu Rev Publ Health 2006, 27:1-28.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [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.
  • [159]National Health and Medical Research Council: Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. Canberra: Commonwealth of Australia; 2003.
  • [160]Leeman J, Harrell JS, Funk SG: Building a research program focussed on vulnerable people. West J Nurs Res 2002, 24:103-111.
  • [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.
  • [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.
  • [163]Popay J: Should disadvantaged people be paid to take care of their health? No. BMJ 2008, 337:a594.
  • [164]Doherty PA, Scott A, Kinder K: Delivering services to hard to reach families in on track areas: definition, consultation and needs assessment. Home Office Development and Practice Report 15http://www.homeoffice.gov.uk/rds/pdfs2/dpr15.pdf webcite
  • [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.
  • [166]Tudor-Hart J: Semicontinuous screening of a whole community for hypertension. Lancet 1970, 2:223-227.
  • [167]Brackertz N: Who is hard to reach and why? ISR working paper 2007. Available at: http://www.sisr.net/publications/0701brackertz.pdf webcite
  文献评价指标  
  下载次数:6次 浏览次数:11次