Informed consent: are researchers accurately representing risks and benefits?

Ahern, Kathryn J.

doi:10.1111/j.1471-6712.2012.00978.x

Cited by 13 publications

(9 citation statements)

References 25 publications

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“…Verbal and written consent was obtained from the participants and they were informed of their right to withdraw from the study at any time. Due to widespread location of participants across the Sydney region and based on evidence supporting the equivalence of telephone and face-to-face interviewing, 26 telephone interviews were determined to be the most convenient mode of data collection. A semi-structured interview guide ( Box 1 ) was developed for the study.…”

Section: Methodsmentioning

confidence: 99%

Patients’ perspectives on the impact of a new COPD diagnosis in the face of multimorbidity: a qualitative study

Ansari

Hosseinzadeh

Dennis

et al. 2014

npj Prim Care Resp Med

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Background:Chronic obstructive pulmonary disease (COPD), a major cause of morbidity and mortality worldwide, often occurs in the presence of comorbidities, which may influence experience and management of the disease. No prior research seems to have gained perspectives of newly diagnosed primary care COPD patients in the context of multimorbidity.Aims:This qualitative study aimed to explore the impact of a new diagnosis of COPD in the context of multimorbidity and also sought to gain a better understanding of how patients react to the diagnosis and incorporate it into their lives.Methods:Participants were identified from a cohort of primary care patients with multimorbidity recently diagnosed with COPD. Data was collected via semi-structured interviews from nine male and eight female participants. Thematic analysis was performed and the data interpreted from a constructivist perspective.Results:Five core themes regarding COPD were induced: (i) reaction to diagnosis, (ii) impact on function and health behaviour, (iii) factors influencing self-management capacity, (iv) healthcare utilisation and (v) interplay of comorbidities. Most participants had difficulty recognising the importance of COPD and its long-term implications. For many, the salience of another chronic condition outweighed COPD. Self-management capacity and utilisation of healthcare services were challenged by low prioritisation of COPD among other comorbidities.Conclusions:This study provides an insight into how primary care patients feel about being diagnosed with COPD, as well as their prioritisation of the disease in the context of multimorbidity. It highlights the need for tailored education and personalised management incorporating patients’ perspectives in primary care.

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Section: Methodsmentioning

confidence: 99%

Patients’ perspectives on the impact of a new COPD diagnosis in the face of multimorbidity: a qualitative study

Ansari

Hosseinzadeh

Dennis

et al. 2014

npj Prim Care Resp Med

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“…When applying for ethical clearance, the researcher needs to state his or her beliefs about the possible risks and benefits for participants and how the risks will be minimized. There has been considerable debate as to whether recalling and answering questions about past abuse has a negative or positive emotional impact for the participants of such research (Ahern, 2012; Becker-Blease & Freyd, 2006; Black & Black, 2007; Draucker, 1999; McClinton Appollis, Lund, de Vries, & Mathews, 2015; Newman & Kaloupek, 2004; Ullman, 2007), and whether those who have been affected by abuse require special protection given that it can be distressing to disclose trauma-related information (Newman & Kaloupek, 2004). Some believe that asking about abuse is upsetting, harmful, and stigmatizing, that survivors may not be emotionally stable enough to assess risk or seek help, and that researchers have an obligation to protect survivors from questions about their experiences (Black & Black, 2007).…”

mentioning

confidence: 99%

The Impact of Participation in Research About Abuse and Intimate Partner Violence: An Investigation of Harms, Benefits, and Regrets in Young Adolescents in the Western Cape of South Africa

Appollis

Eggers

Vries

et al. 2017

J Interpers Violence

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There is very little evidence whether recalling and answering questions about abuse or interpersonal violence has a positive or negative impact on participants of such research. This is an important ethical dilemma to ensure an appropriate risk-benefit ratio in research with young people is maintained. We assessed reported harms, benefits, and regrets of young adolescents who participated in a sensitive research project, and compared the harms and benefits in those who had and had not been victims and/or perpetrators of abuse or intimate partner violence. Participants were 3,264 adolescents aged 12 to 15 years in 41 public schools in the Western Cape, South Africa, who completed a survey about intimate partner violence, verbal, physical, and sexual abuse, as part of an HIV prevention cluster randomized controlled trial. The majority of participants reported research participation as beneficial (70.3%), while 27.7% reported harms and 14% regrets. Victims of abuse were more likely than non-victims to report benefits (71.9% vs. 67.1%; p = .02) and harms (31% vs. 20.9%; p < .01) and were less likely to report regret (13.1% vs. 16.7%; p = .02). Perpetrators of abuse were less likely than non-perpetrators to report benefits (67.4% vs. 72.8%; p = .01) and more likely to report harms (36.4% vs. 26.1%; p < .01) and regrets (17.4% vs. 13.3%; p = .01). Our findings suggested that research participation was more likely to have a positive rather than a negative emotional impact on young adolescents and that relatively few regretted participating. Victims and perpetrators of abuse were more likely to report benefits than harms, supporting the ethical appropriateness of ongoing research on abuse and violence. We recommend that further research is required to clarify and standardize terminology and instruments to quantify these kinds of evaluations, including measurement of the severity and intensity of reported benefits, harms and regrets, and the longer term impact of participation in sensitive research.

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“…Researching sensitive issues with vulnerable people has in fact rarely been found to cause distress for participants (46). In the small percentage of people for whom this has occurred, the distress is not thought to be long lasting or harmful (47) and does not prevent them from feeling that they have benefited from the experience (48,49).…”

Section: Researcher Perspectives Of Participant Burdenmentioning

confidence: 99%

Capturing the Stories behind the Numbers: The Auckland Regional Community Stroke Study (ARCOS IV), a Qualitative Study

Rutherford

Theadom

Jones

et al. 2013

International Journal of Stroke

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Informed consent: are researchers accurately representing risks and benefits?

Cited by 13 publications

References 25 publications

Patients’ perspectives on the impact of a new COPD diagnosis in the face of multimorbidity: a qualitative study

Patients’ perspectives on the impact of a new COPD diagnosis in the face of multimorbidity: a qualitative study

The Impact of Participation in Research About Abuse and Intimate Partner Violence: An Investigation of Harms, Benefits, and Regrets in Young Adolescents in the Western Cape of South Africa

Capturing the Stories behind the Numbers: The Auckland Regional Community Stroke Study (ARCOS IV), a Qualitative Study

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