Capacity to Provide Informed Consent for Participation in Schizophrenia and HIV Research

Moser, David J.; Schultz, Susan K.; Arndt, Stephan; Benjamin, Michelle; Fleming, Frank; Brems, Colleen S.; Paulsen, Jane S.; Appelbaum, Paul S.; Andreasen, Nancy C.

doi:10.1176/appi.ajp.159.7.1201

Cited by 180 publications

(165 citation statements)

References 18 publications

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“…1) (Weinstock et al 1984;Veliz & James, 1987;Norko et al 1990;Bean et al 1994;Grisso et al , 1997Carpenter et al 2000;Moser et al 2002Moser et al , 2005Moser et al , 2006Valletto et al 2002;Wong et al 2000Wong et al , 2005Bellhouse et al 2003;Kovnick et al 2003;Vollmann et al 2003;Cohen et al 2004;Palmer et al 2004Palmer et al , 2005Srebnik et al 2004;Cairns et al 2005;Eyler et al 2005Eyler et al , 2007Koren et al 2005;Stroup et al 2005;Candilis et al 2006Candilis et al , 2008Dunn et al 2007;Moye et al 2008;Kavanagh et al 2008;Jeste et al 2009;Owen et al 2009aOwen et al , 2011De Marco et al 2010;Capdevielle et al 2009;Linder et al 2012;Di & Cheng, 2013;Fischer et al 2013;Kumar et al 2013;Lan et al 2013;Raffard et al 2013;Skipworth et al 2013;Chiu et al 2014). A clinician with expertise in the field [G Shields (GS)] ...…”

Section: Resultsmentioning

confidence: 99%

Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

et al. 2017

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Background. Valid consent for treatment or research participation requires that an individual has decision-making capacity (DMC), which is the ability to make a specific decision. There is evidence that the psychopathology of schizophrenia can compromise DMC. The objective of this review was to examine the presence or absence of DMC in schizophrenia and the socio-demographic/psychopathological factors associated.Methods. We searched three databases Embase, Ovid MEDLINE(R), and PsycINFO for studies reporting data on the proportion of DMC for treatment and research (DMC-T and DMC-R), and/or socio-demographic/psychopathological associations with ability to make such decisions, in people with schizophrenia and related illnesses.Results. A total of 40 studies were identified. While high levels of heterogeneity limited direct comparison, meta-analysis of inpatient data showed that DMC-T was present in 48% of people. Insight was strongly associated with DMC-T. Neurocognitive deficits were strongly associated with lack of DMC-R and to a lesser extent DMC-T. With the exception of years of education, there was no evidence for an association with socio-demographic factors.Conclusions. Insight and neurocognitive deficits are most closely associated with DMC in schizophrenia. The lack of an association with socio-demographic factors dispels common misperceptions regarding DMC and characteristics such as age. Although our results reveal a wide spectrum of DMC-T and DMC-R in schizophrenia, this could be partly due to the complexity of the DMC construct and the heterogeneity of existing studies. To facilitate systematic review research, there is a need for improvement within research study design and increased consistency of concepts and tools.

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Section: Resultsmentioning

confidence: 99%

Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

et al. 2017

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“…Though some instruments are available to evaluate participants' capacity to provide informed consent, they are geared to adult populations or clinical trial research and were therefore not applicable to the NorthBEAT context (Casarett, Karlawish, & Hirschman, 2003;Hein et al, 2012;Koelch, Prestel, Singer, Schulze, & Fegert, 2010;Moser et al, 2002;Wirshing, Wirshing, Marder, Liberman, & Mintz, 1998;Zayas, Cabassa, & Perez, 2005). Therefore, we developed a two-step protocol to determine whether NorthBEAT participants were capable of consenting, anticipating that there would be children under 18 years of age capable of consenting.…”

Section: Assessing Capacity To Consent To Research Participationmentioning

confidence: 99%

NorthBEAT’s Capacity-to-Consent Protocol for Obtaining Informed Consent from Youth Evaluation Participants: An Alternative to Parental Consent

Nadin

Katt

Dewa

et al. 2018

Canadian Journal of Program Evaluation

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Ethical practice compels evaluators to obtain informed consent from evaluation participants. When those participants are minors, parental consent is routinely sought. However, seeking parental consent may not be appropriate in all evaluation contexts. This practice note presents one context (mental health services research in rural Canada Mots clés : capacité, consentement éclairé, jeunesEthical practice compels evaluators to obtain informed consent from evaluation participants. When those participants are minors, parental consent is routinely sought. However, some practitioners have highlighted the need to think critically about that practice, arguing that parental consent is not appropriate in all contexts. This practice note describes one such context and offers an alternative for evaluators to consider when involving youth in evaluation. The project context is described and the informed consent literature is briefly reviewed, emphasizing critiques of the parental consent requirement. The "capacity-to-consent" protocol that was used to obtain consent from youth participants (without parental consent) is then described, followed by a discussion of the protocol and its implications for evaluation practice. CONTExT The NorthBEAT ProjectNorthBEAT (Barriers to Early Assessment and Treatment) is a study that assessed the mental health service needs of youth 1 in Northern Ontario who experience psychosis. A mixed-methods approach was adopted, which included two types of interviews with youth who had experienced psychosis: (1) semi-structured (qualitative) interviews explored participants' help-seeking and mental health service experiences, as well as their perceptions of how services could be improved; (2) structured interviews collected quantitative data to assess participants' symptoms and functional status.Participants were recruited from across Northern Ontario, through agencies where they received services for a severe mental illness; participants were between 13 and 21 years of age. Given the age of the participants, we initially planned to seek parental consent for their participation. Upon reflection, however, the project context caused us to question the appropriateness of seeking parental consent. Concerns about seeking parental consent for youth participation in NorthBEAT Ethical concernsParticipants were recruited from mental health service agencies where they were accessing service for psychosis. Many youth in this region-especially Indigenous youth-do not live in the same location as their parents because they attend school outside of their communities. Some youth seek treatment while living away from their communities. Or, in some cases, their parents do not know the extent of their mental health issues. Requiring parental consent threatened to minimize youth's right to privacy with respect to their health information. Practical concernsParticipants were recruited from 10 programs across Northern Ontario. This is a region with a vast geography and scarce population; many residents live in ru...

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“…[35] Çeşitli araştırmacılar negatif belirtilerin karar verme kapasitesiyle pozitif belirtilere kıyasla daha ilişkili olduğunu göstermişler-dir. [37,38] Stroup ve arkadaşları ayrıca sözel bellek, dikkat, işlemleme hızı, akıl yürüt-me ve çalışma belleği gibi nöropsikolojik işlevlerin anlama, kavrama ve akıl yürütmeyi daha güçlü yordadığını saptamışlardır. [37] Ghormley ve arkadaşları depresyonda olan ve yatarak tedavi gören 31 hasta ile 16 normal katılımcıyı karşılaştırdıkları çalışmaların-da, nöropsikolojik bozulmanın (özellikle yeni bilgiyi öğrenme) onam formunda paylaşı-lan bilgilerin anlaşılması üzerinde etkisi olduğunu, aynı zamanda verilen bilgiyi anlamayan katılımcılara tanıma belleklerini güçlendirecek ipuçları verildiğinde, anlama becerilerinin arttığını gözlemişlerdir.…”

Section: Bilişsel Süreçlerunclassified

Informed Consent and Capacity to Give Consent in Mental Disorders

Maçkalı¹

2014

Psikiyatride Guncel Yaklasimlar - Current Approaches in Psychia

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ÖzetSağlık alanında etik davranışları belirleyen dört temel ilke (özerkliğe saygı, faydalı olma, zarar vermeme ve adalet) içinde en çok 'özerkliğe saygı' prensibiyle ilişkili olan bilgilendirilmiş onam aynı zamanda danışanın karar verme hakkı ve hastaya/danışana ve özerkliğine verilen değeri de yansıtır. Bilgilendirilmiş onam, bireyin pek çok farklı seçenek içinden kendisi için en uygun yöntemi seçmek üzere mantıklı bir karar almasını ve klinisyen ile etkileşimi de kapsayan bilgi paylaşım sürecidir. Bu kavram gizliliğin sınırlarına, yetkinliğe, uygun ve yeterli bilgi paylaşımına, gönüllülüğe dair ölçütle-rin neler olduğuna ilişkin klinisyenlere ışık tutmaktadır. Bir kuramsal derleme olan bu çalışmada bilgilendirilmiş onam kavramının tanımları ve içeriği paylaşıldıktan sonra, psikoterapistlerin psikoterapi sürecinde kullanacakları onam formunun neleri kapsaması, bilgilendirilmiş onam bileşenleri irdelenmiştir. Ardından yukarıda belirtilen tanı grupları kapsamında ruhsal bozukluklar ve onam verme kapasitesi ilişkisi incelenmiştir. AbstractAmong four basic principles (respect for autonomy, beneficence, non-malfeasance, and justice) which determine ethical behaviors in healthcare, informed consent is mostly related to 'respect for autonomy'. Also, it reflects patient/client's right for decision and the value given for the client and his/her autonomy. Informed consent is an information sharing process including both rational decision-making about the most appropriate method among many different options and the interaction between the clinician and the client. This concept sheds light on criteria regarding the limits of confidentiality, competency, appropriate and sufficient information sharing and voluntariness. In this theoretical review, the definitions and the content of informed consent were shared, and then a section regarding the required content of informed consent for psychotherapy process was provided. Then, the components of informed consent were discussed and the relationship between capacity to consent and mental disorders in terms of aforementioned diagnostic groups was examined.

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Capacity to Provide Informed Consent for Participation in Schizophrenia and HIV Research

Cited by 180 publications

References 18 publications

Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

NorthBEAT’s Capacity-to-Consent Protocol for Obtaining Informed Consent from Youth Evaluation Participants: An Alternative to Parental Consent

Informed Consent and Capacity to Give Consent in Mental Disorders

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