Abstract
OBJECTIVE: It can be difficult to recruit patients from Black and Asian Minority Ethnic Groups (BAME) in renal research and due to a multitude of factors including, but not limited to, language. Equally, when patients do consent to research participation, it is important to understand their motivation to do so. In our research, we sought to recruit 250 hemodialysis (HD) patients from South Asian backgrounds into a study aimed at identifying depression in 4 South Asian subgroups. Importantly, we addressed language and cultural barriers by providing patients with access to translated study materials and bi-lingual project workers to support informed consent and research participation. Here we report on the perspectives of the project workers in relation to the reasons that patients do and do not consent to taking part in renal research of a psychosocial nature.
METHOD: One-to-one interviews were completed with 10 bilingual project workers who facilitated patient recruitment and data collection across all of the NHS Trusts that were involved in the study. Interviews focused on unearthing project worker experiences of trying to recruit patients into the study and their thoughts and feelings about reasons advanced when making decisions about whether or not to contribute. Interviews were transcribed verbatim and analyzed thematically.
RESULTS: 18 months into the study, 210 patients had been recruited against a target of 250 and from a combined patient pool of 1,359. Project workers observed that research was a novel concept to many patients and therefore required detailed explanation. This acted to both facilitate participation in the study but also presented a barrier in terms of some of the concepts involved being difficult for patients to understand. There were also practical barriers that may apply to all HD patients.
CONCLUSION: When providing tailored opportunities to participate in research, the use of bilingual project workers is essential to help patients understand renal research since many will lack capacity to access translated materials due to literacy skills and or encounter difficulty with understanding the concepts involved in research participation. Many of the barriers to participation are also culture general and relate more to the logistics of participation alongside the demands of the HD regimen.
Research funded by the National Institute of Health Research (Research for Patient Benefit)
METHOD: One-to-one interviews were completed with 10 bilingual project workers who facilitated patient recruitment and data collection across all of the NHS Trusts that were involved in the study. Interviews focused on unearthing project worker experiences of trying to recruit patients into the study and their thoughts and feelings about reasons advanced when making decisions about whether or not to contribute. Interviews were transcribed verbatim and analyzed thematically.
RESULTS: 18 months into the study, 210 patients had been recruited against a target of 250 and from a combined patient pool of 1,359. Project workers observed that research was a novel concept to many patients and therefore required detailed explanation. This acted to both facilitate participation in the study but also presented a barrier in terms of some of the concepts involved being difficult for patients to understand. There were also practical barriers that may apply to all HD patients.
CONCLUSION: When providing tailored opportunities to participate in research, the use of bilingual project workers is essential to help patients understand renal research since many will lack capacity to access translated materials due to literacy skills and or encounter difficulty with understanding the concepts involved in research participation. Many of the barriers to participation are also culture general and relate more to the logistics of participation alongside the demands of the HD regimen.
Research funded by the National Institute of Health Research (Research for Patient Benefit)
| Original language | English |
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| Publication status | Published - 26 Apr 2017 |
| Event | British Renal Society Annual Conference - Nottingham University Duration: 26 Apr 2017 → 28 Apr 2017 |
Conference
| Conference | British Renal Society Annual Conference |
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| Period | 26/04/17 → 28/04/17 |