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

BMC Medical Research Methodology Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups Billie Bonevski 0 1 Madeleine Randell 0 Chris Paul 3 Kathy Chapman 2 Laura Twyman 0 Jamie Bryant 3 Irena Brozek 2 Clare Hughes 2 0 School of Medicine & Public Health, Faculty of Health & Medicine, University of Newcastle , Callaghan, NSW , Australia 1 School of Medicine & Public Health, Calvary Mater Hospital, University of Newcastle , Level 5, McAuley Building, Callaghan 2308, NSW , Australia 2 Cancer Council NSW , 153 Dowling Street, Woolloomooloo, Sydney, NSW , Australia 3 Health Behaviour Research Group, Priority Research Centre for Health Behaviour, Faculty of Health & Medicine, University of Newcastle , Callaghan, NSW , Australia 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. Systematic review; Medical research; Vulnerable groups - Background The omission of groups of lower socioeconomic status from public health and medical research has been observed for some time regardless of type of research study [1]. In most Western developed countries white, middle class, highly educated males tend to be overrepresented in health and medical research and people from socially disadvantaged groups under-represented [1,2]. Failure to obtain medical research data which accurately reflects the breadth of the whole population poses a number of drawbacks including threats to external validity and ability to generalise [3], denying excluded groups from any health benefits of trial participation [4], inability to check the safety of health innovations with sub-groups in the population [5], and failing to identify groups that have the highest burden of illness and developing an understanding of why differences exist [6]. Researchers continue to struggle to access, engage and retain participants from socially disadvantaged groups [7], resulting in labels such as hard-to-reach or hidden. According to Sydors [8] definition that hard to reach populations are difficult for researchers to access, and Lambert and Wiebels [9] definition of hidden populations as those who are disadvantaged and disenfranchised: the homeless and transient, chronically mentally ill, high school drop-outs, criminal offenders, prostitutes, juvenile delinquents, gang members, runaways and other street people, socially disadvantaged groups are difficult for researchers to access cost-efficiently in large numbers necessary for statistically powerful study designs. There are many reasons why socially disadvantaged groups are not included in health and medical research. Understanding these factors is necessary for developing strategies to increase the level of involvement and participation in health and medical research for disadvantaged groups. This study aims to review the literature regarding the barriers to sampling, recruitment, participation, and retention of members of socially disadvantaged groups in health research and the strategies for overcoming the barriers that may help increase the amount of health research conducted w (...truncated)