Attitudes of patients with schizophrenia and depression towards psychiatric research

Edlinger, Monika; Deisenhammer, E; Fiala, Michaela; Hofer, Alex; Kemmler, Georg; Strauss, Robert P.; Widschwendter, Christian G.; Fleischhacker, W. Wolfgang

doi:10.1016/j.psychres.2008.12.010

Cited by 10 publications

(12 citation statements)

References 16 publications

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“…IRB members perceived all recruitment strategies as less safe. In many, although not all, ways these trends resonate with findings from research with other groups who may experience similar dynamics (Edlinger et al, 2010;Karlawish et al, 2008;Kim, Cox, & Caine, 2002;Kim et al, 2009;Kim, Kim, McCallum, & Tariot, 2005;Roberts, Hammond, et al, 2004;Roberts & Kim, 2014;Wendler, Martinez, Fairclough, Sunderland, & Emanuel, 2002).…”

Section: Discussionmentioning

confidence: 53%

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

McDonald

Conroy

Kim

et al. 2016

Journal of Empirical Research on Human Research Ethics

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Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

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Section: Discussionmentioning

confidence: 53%

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

McDonald

Conroy

Kim

et al. 2016

Journal of Empirical Research on Human Research Ethics

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“…The only available data involve potential research subjects with psychiatric disorders in general. These studies have consistently shown that such patients generally possess the capacity to provide informed consent [75] and, furthermore, that they perceive mental health research as ethically acceptable, even for those experiencing “a lot of emotional pain” [76, 77]. Additionally, depressed patients overwhelmingly report altruistic motives for enrolling in research [77, 78].…”

Section: Discussionmentioning

confidence: 99%

“…These studies have consistently shown that such patients generally possess the capacity to provide informed consent [75] and, furthermore, that they perceive mental health research as ethically acceptable, even for those experiencing “a lot of emotional pain” [76, 77]. Additionally, depressed patients overwhelmingly report altruistic motives for enrolling in research [77, 78]. Although the studies cited above did not specifically address whether or not they included participants with suicidal ideation, it is unclear how important the presence or absence of suicidal ideation is in the phenomenology of depression.…”

Section: Discussionmentioning

confidence: 99%

Research on the pathophysiology, treatment, and prevention of suicide: practical and ethical issues

et al. 2019

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Background: Despite decades of research, the rate of death from suicide is rising in the United States. Suicide is a complex and multifactorial phenomenon and, to date, no validated biomarkers that predict suicidal behavior have been identified. Only one FDA-approved drug to prevent suicide exists, and it is approved only for patients with schizophrenia. Although anti-suicide psychotherapeutic techniques exist, treatment takes time, and only preliminary data exist for rapid-acting therapies. Discussion: While more research into suicidal ideation and acute suicidal behavior is clearly needed, this research is fraught with both practical and ethical concerns. As a result, many investigators and bioethicists have called for restrictions on the types of research that individuals with suicidal behavior can participate in, despite the fact that the available empirical evidence suggests that this research can be done safely. This manuscript presents background information on the phenomenology of suicide, discusses the current state of treatment and prevention strategies, and reviews the practical and ethical issues surrounding suicide research in the context of available empirical data. Summary: Currently, the causes of suicide are poorly understood, in part due to the fact that very few studies have investigated the acute suicidal crisis. Although some biomarkers for predicting risk have been developed, none have been sufficiently validated. The most successful current interventions involve means restriction. However, while numerous hurdles face researchers, these are not insurmountable. The available evidence suggests that research into suicide can be conducted both safely and ethically.

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“…However, other reasons for dropout may relate to a patient’s mental status and include lack of interest and tiredness. Patients can express interest in having something to do in the hospital, but then not actually have the time to participate [75,77]. This notion has been mentioned in a study by Furimsky et al [81], when patients with psychosis did not want to continue the study because it took up their time or they felt that their well-being had increased during the follow-up period and therefore did not think that they would benefit from participating any more.…”

Section: Discussionmentioning

confidence: 99%

Feasibility, Acceptability, and Preliminary Impacts of Web-Based Patient Education on Patients With Schizophrenia Spectrum Disorder: Quasi-Experimental Cluster Study

Laine¹,

Välimäki²,

Pekurinen³

et al. 2019

J Med Internet Res

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BackgroundWeb-based interventions are promising tools for increasing the understanding of illness and treatment among patients with serious mental disorders.ObjectiveThis study aimed to test the feasibility and acceptability of a Web-based patient education intervention using a quasi-experimental cluster design to report feedback on patient education sessions and the website used and to report preliminary evidence of the intervention’s impact on patients with schizophrenia spectrum disorder.MethodsA single-blind, parallel, quasi-experimental cluster study over a 6-month period comparing Web-based education (n=33) with a nonequivalent control group (treatment as usual, n=24) for people with schizophrenia spectrum disorder was conducted. Participants (N=57) were recruited from one psychiatric hospital (6 wards). Feasibility was assessed by participants’ commitment (refusal rate, dropout rate) to the study. Acceptability was assessed as participants’ commitment to the intervention. Patient education sessions and website feedback were assessed by the patients and health care professionals. The preliminary impact of the sessions on patients’ self-efficacy, self-esteem, illness cognition, and knowledge level was measured at baseline and follow-ups (8 weeks, 6 months) with self-rated questionnaires.ResultsThe refusal rate among patients was high with no statistically significant difference (69% [74/107] in the intervention group, 76% [76/100] in the control group; P=.21). The same result was found for the dropout rates (48% [16/33] vs 58% [14/24]; P=.46). The acceptability of the intervention was good; 31 participants out of 33 (94%) completed all five sessions. Feedback on the intervention was mainly positive; three out of four subscales of session were rated above the midpoint of 4.0. Feedback on the website was also positive, with a grade of good for content (69%, 20/29 patients; 75%, 21/28 professionals), layout (62%, 18/29 patients; 61%, 17/28 professionals), and usability (62%, 18/29 patients; and 68%, 19/28 professionals). The patients using the intervention had significantly higher scores 6 months after the sessions in self-efficacy (baseline mean 26.12, SD 5.64 vs 6-month mean 29.24, SD 6.05; P=.003) and regarding knowledge level about schizophrenia (mean 11.39, SD 4.65 vs 6-month mean 15.06, SD 5.26; P=.002), and lower scores in the subscale of helplessness in illness cognition (mean 2.26, SD 0.96 vs 6-month mean 1.85, SD 0.59; P=.03). Differences from the control group were not significant. No differences were found in patients’ self-esteem or other subscales in illness cognition.ConclusionsThe patients were reluctant to participate in the study and tended to drop out before the follow-ups. Once they had participated, their acceptance of the intervention was high. A more effective recruitment strategy and monitoring method will be needed in future studies. To assess the impact of the intervention, a more rigorous study design with an adequately powered sample size will be used in cooperation with outpatient me...

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Attitudes of patients with schizophrenia and depression towards psychiatric research

Cited by 10 publications

References 16 publications

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

Research on the pathophysiology, treatment, and prevention of suicide: practical and ethical issues

Feasibility, Acceptability, and Preliminary Impacts of Web-Based Patient Education on Patients With Schizophrenia Spectrum Disorder: Quasi-Experimental Cluster Study

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