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      Knowledge and experience of cancer prevention and screening among Gypsies, Roma and Travellers: a participatory qualitative study

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          Abstract

          Background

          The incidence of cancer is increasing worldwide, which has led to greater public health focus on primary prevention. Ethnic minorities have lower awareness of cancer risk factors and services, and are at greater risk of cancer mortality. While Gypsies, Roma and Travellers have poor health outcomes even in comparison with other ethnic minorities, little is known about how they view and enact primary prevention. This study takes a participatory approach to explore knowledge and experience of cancer prevention and screening in these communities.

          Methods

          Peer researchers conducted interviews ( n = 37) and a focus group ( n = 4) with a purposive sample of community members in Wales and South-West England. Participants self-identified as Roma (from Slovakia and Romania) or as Gypsies, Travellers or Showpeople (here described as Gypsy/Travellers). A third of the sample were Roma, and a quarter male, with ages ranging from 18 to 77 years. Data were collected from October 2018 to March 2019.

          Results

          Women and men knew that lifestyle factors, such as healthy diet, stopping smoking, drinking less alcohol and using sun protection, contribute to cancer risk reduction. However, there was a widespread lack of confidence in the effectiveness of these measures, particularly in relation to smoking. Traditional cultural beliefs were shared by Roma and Gypsy/Travellers, but did not necessarily affect the behaviour of individuals. Most women participated in cervical and breast screening but few Gypsy/Traveller men would engage with bowel screening, which conflicted with community ideals of stoical masculinity. Roma participants described language barriers to screening, with confusion about differences in timing and eligibility between the UK and Slovakian programmes; this led some to access screening abroad.

          Conclusion

          This study provides new knowledge about how Gypsies, Roma and Travellers keep healthy and prevent disease, giving insights into similarities and differences between ages, sexes and communities. These culturally distinct and high-need ethnic minorities have specific needs in relation to cancer prevention and screening, which merit targeted and acceptable health promotion to reduce health inequalities.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12889-021-10390-y.

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          Most cited references40

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          Using the framework method for the analysis of qualitative data in multi-disciplinary health research

          Background The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations. Discussion The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study. Summary Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research.
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            Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups

            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.
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              Why is changing health-related behaviour so difficult?

              To demonstrate that six common errors made in attempts to change behaviour have prevented the implementation of the scientific evidence base derived from psychology and sociology; to suggest a new approach which incorporates recent developments in the behavioural sciences.
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                Author and article information

                Contributors
                l.j.condon@swansea.ac.uk
                jolana.c222@gmail.com
                leeannemorgan6@gmail.com
                glenn@gmmiles.co.uk
                D.R.Fenlon@Swansea.ac.uk
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                16 February 2021
                16 February 2021
                2021
                : 21
                : 360
                Affiliations
                [1 ]GRID grid.4827.9, ISNI 0000 0001 0658 8800, College of Human and Health Sciences, , Swansea University, ; Singleton Park, Swansea, Wales, SA2 8PP UK
                [2 ]Member of the Roma community, UK
                [3 ]Member of the Gypsy community, UK
                Author information
                http://orcid.org/0000-0003-2547-5603
                Article
                10390
                10.1186/s12889-021-10390-y
                7885498
                33593323
                a91d6fd2-a667-478f-99b7-71a57b1028ce
                © The Author(s) 2021

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 15 April 2020
                : 4 February 2021
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000723, Tenovus;
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2021

                Public health
                cancer prevention,screening,roma, gypsies and travellers,qualitative,peer researchers

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