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

Mansour, Hicham; Zaki, Nadia; Abdelhai, Rehab Abdelhai Ahmed; Sabry, Nirmeen A.; Silverman, Henry; El-Kamary, Samer S.

doi:10.26719/2015.21.3.155

Cited by 14 publications

(19 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…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%

“…In general, most of our participants expressed favourable attitudes towards research. For example, more than 90% believed that research was necessary to improve the health of society; similar findings regarding the importance of research have been reported in other studies from the Middle East (9,13). We found that 50.0% of participants stated a desire to help others as a reason to enrol in research.…”

Section: Discussionsupporting

confidence: 82%

“…Also, the chance to get better treatment was stated by only 41.1% of our respondents as a reason to participate in research. In contrast, a recent study in Saudi Arabia reported that 80.4% of their respondents stated that “receiving best medical care” was a motivation to enrol in clinical trials (13), and in an Egyptian study 100% of the participants who were enrolled in clinical trials were motivated to receive a “chance to get better treatment” (9). These 2 studies were focused on motivations for enrolling in clinical trials, which have potential direct benefits to participants, whereas our survey asked respondents for their reasons to enrol in research that also included blood sampling and questionnaire studies; this might explain why fewer of our participants cited better treatment/care as a motivation.…”

Section: Discussionmentioning

confidence: 93%

“…Finally, the conduct of research in the Middle East is limited compared with other regions in the world (3), and hence, several of the troubling perceptions expressed by our study population might not reflect how research is actually conducted and the level of safeguards associated with research that provide protection of their welfare and rights in research. Consequently, perceptions might differ from those who have participated in research (9). Nonetheless, the perceptions held by our study population can represent major limiting factors for recruitment for research and impair trust in the research endeavour and hence, need to be addressed.…”

Section: Discussionmentioning

confidence: 99%

See 3 more Smart Citations

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

View full text Add to dashboard Cite

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

show abstract

Section: Discussioncontrasting

confidence: 98%

Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 93%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

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

View full text Add to dashboard Cite

show abstract

“…Peculiarly, for many years papers on the matter originated almost exclusively from North America, but recently information on TM has emerged from more diverse populations including those with epilepsy in Finland3 and a broader group in Egypt,4 apparently reinforcing the idea that TM remains persistent. However, according to Kim et al , while TM is a serious problem when it occurs, this is not very often –it seems to be a real issue only in low numbers of the subjects that they have studied 5.…”

mentioning

confidence: 99%