Attitudes of dental patients towards participation in research

Al‐Amad, Suhail H.; Awad, Manal M.; Silverman, Henry

doi:10.26719/2014.20.2.90

Cited by 9 publications

(45 citation statements)

References 28 publications

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“…We found that 50.0% of participants stated a desire to help others as a reason to enrol in research. This, however, contrasts with other studies showing that more than 90% stated a similar reason (9,12,13). Also, the chance to get better treatment was stated by only 41.1% of our respondents as a reason to participate in research.…”

Section: Discussioncontrasting

confidence: 98%

Patients' attitudes and preceptions regrding research and their rights: a pilot survey study from the Middle East

Hifnawy

Kobrosly

Edwards

et al. 2017

East Mediterr Health J

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Attitudes et perceptions des patients à l'égard de la recherche et de leurs droits : étude pilote au Moyen-Orient RESUME La surveillance éthique et réglementaire de la recherche peut ne pas être optimale dans les pays à revenu faible et intermédiaire. Afin de déterminer les attitudes et les perceptions des patients à l'égard de la participation à la recherche et des perceptions de leurs droits, nous avons recruté 202 participants dans des hôpitaux en Arabie saoudite, en Égypte, au Liban et au Soudan, et leur avons demandé de compléter un questionnaire évaluant leurs attitudes et perceptions à ce sujet. Environ 20 % croyaient qu'il arrivait que des médecins mènent des recherches sur des patients sans leur consentement, et 35 % pensaient que si les participants se retiraient du processus de recherche, ils ne bénéficieraient pas de soins médicaux de qualité. Plus de 85 % pensaient qu'ils devaient avoir droit à la confidentialité de leurs données, à des soins médicaux gratuits en cas d'incident durant la recherche et qu'ils devaient pouvoir poser des questions. Près de la moitié étaient d'avis qu'ils avaient le droit de se retirer de la recherche sans être pénalisés, et environ 75 % pensaient qu'ils pouvaient adresser des plaintes sans craindre de subir des préjudices. Les participants illettrés ou sans emploi étaient moins susceptibles d'évaluer leurs droits que les autres participants. To determine patients' attitudes and perceptions toward research participation and perceptions of their rights, we recruited 202 participants from hospitals in Egypt, Lebanon, Saudi Arabia and Sudan and asked them to complete a questionnaire assessing attitudes and perceptions. Around 20% believed that doctors sometimes perform research on patients without their knowledge and 35% believed that if participants withdrew from the research they would not receive good medical care. Over 85% believed that they should have rights regarding confidentiality of data, free medical care if injured during the research and asking questions. Almost half believed they have a right to withdraw without penalty and around 75% believed they could make complaints without fear of harm. Those who were illiterate or unemployed were less likely to appreciate their rights compared with their counterparts. ‫األوسط‬ ‫الرشق‬ ‫من‬ ‫جتريبية‬

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Section: Discussioncontrasting

confidence: 98%

Patients' attitudes and preceptions regrding research and their rights: a pilot survey study from the Middle East

Hifnawy

Kobrosly

Edwards

et al. 2017

East Mediterr Health J

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“…Confidentiality concerns were mentioned 12 times , ranked in the top three, four times , and ranked first, three times . Confidentiality concerns were ranked highest by research participants in North Africa and the Middle East (second), even though it was ranked fifth overall.…”

Section: Resultsmentioning

confidence: 99%

“…Additional reasons for participation mentioned were: ability to withdraw , advice from physician , community involvement , cultural acceptability , creating a feeling of community , low pressure decision , need for treatment , research involving a non‐invasive procedure , peer enrolment , low perception of risk , result availability , guarantee of confidentiality , being unaware of voluntariness of participation , research outcome, and finally seeing research participation as motivation to avoid risky behaviour .…”

Section: Resultsmentioning

confidence: 99%

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The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

Browne

Rees

Delden

et al. 2019

Tropical Med Int Health

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ObjectivesTo systematically review reasons for the willingness to participate in biomedical human subjects research in low‐ and middle‐income countries (LMICs).MethodsFive databases were systematically searched for articles published between 2000 and 2017 containing the domain of ‘human subjects research’ in ‘LMICs’ and determinant ‘reasons for (non)participation’. Reasons mentioned were extracted, ranked and results narratively described.ResultsNinety‐four articles were included, 44 qualitative and 50 mixed‐methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non‐participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non‐patient or patient participants and real or hypothetical study designs.ConclusionsAddressing factors that affect (non‐)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.

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“…Essentially, if research participants believe they are receiving the usual medical care, and have incorrect beliefs that their treatment will be tailored to their needs and be beneficial to them, they might not appreciate the risk associated with clinical trials, thus further undermining the validity of their informed consent (9). While the prevalence and factors associated with therapeutic misconception in the developed world have been explored (10,11), only a few studies have explored the extent to which it exists in the developing world, including the EMR (12). A better understanding of the prevalence and the underlying factors associated with therapeutic misconception would allow investigators to address these issues prior to initiating their research.…”

Section: Introductionmentioning

confidence: 99%

155 Investigating the informed consent process, therapeutic misconception and motivations of Egyptian research participants: a qualitative pilot study

Mansour¹,

Zaki²,

Abdelhai³

et al. 2015

Easter Mediterr Health J

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Few studies have explored the informed consent process among research participants in developing countries. This study aimed to evaluate the informed consent process, therapeutic misconception and motivation for participation among Egyptians participating in clinical trials. In a cross-sectional qualitative pilot study 103 participants in 10 clinical trials responded to a questionnaire. Over 90% agreed they had time to ask questions and received adequate information about the risks prior to consenting. All participants thought the research and the drug would improve their condition; only 46.1% were aware of receiving a non-approved experimental drug and 21.3% of being randomized. Reasons for participation included: better treatment (100%), to benefit society & advance science (85.4%), to receive free drugs (42.6%) and medical care (43.6%), to get hospitalized (15.8%) and to receive money or gifts (4.9%). Investigators need to emphasize the distinction between research and clinical care to address the high rate of therapeutic misconception.

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Attitudes of dental patients towards participation in research

Cited by 9 publications

References 28 publications

Patients' attitudes and preceptions regrding research and their rights: a pilot survey study from the Middle East

Patients' attitudes and preceptions regrding research and their rights: a pilot survey study from the Middle East

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

155 Investigating the informed consent process, therapeutic misconception and motivations of Egyptian research participants: a qualitative pilot study

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