Implementing continuous consent in qualitative research

Klykken, Fride Haram

doi:10.1177/14687941211014366

Cited by 32 publications

(26 citation statements)

References 52 publications

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“…This checklist requires the researchers to be ethically sensitive in all phases of the research process by means of reflection questions. At the same time, it ensures that the person involved can always renegotiate his or her consent in the sense of ongoing consent [ 44 ] throughout the entire process.…”

Section: Methodsmentioning

confidence: 99%

Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities

Dins

Keeley

2022

IJERPH

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Background: People with profound intellectual disabilities represent a vulnerable and heterogeneous population whose health-related needs and questions often remain unheard. One reason for this is that they are usually unable to participate in verbal communication. However, there is also a lack of suitable approaches to communicate health-related information to them according to their capabilities. The research presented in this paper addresses this gap. Methods: Following grounded theory methodology, we used a multimethod approach. Based on a theoretical analysis, a Delphi study (n = 14) was conducted as a starting point to map the research field. In a second step, these findings were incorporated into an online survey targeting disability care professionals (n = 111). Three field studies supplemented the data, encompassing a variety of ethnographic methods. Results: People with PIMD have basic health-related capabilities that can improve their health literacy. Nevertheless, their support environments have to take over many health literacy-related requirements by proxy or substitution. One of the most important tasks is to engage health information in an individualised way. Conclusions: The findings underline the importance of focusing on more basic capabilities and intersubjective approaches in health literacy research and practice, especially regarding new perspectives on the inclusion of previously marginalised populations (such as people with PIMD).

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Section: Methodsmentioning

confidence: 99%

Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities

Dins

Keeley

2022

IJERPH

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“…We do this in the pre-fieldwork/pre-participation phase or during the fieldwork/participation phase, but also after leaving the fieldwork. 18 A few months after the specific participative trajectory had formally ended, one of the artists/researchers involved passed away unexpectedly. When Flora learned about what happened, with her assistant she made a beautiful card for the family of the artist/researcher.…”

Section: R E L Ationa L Ethic S a N D Ge N U I N E Con Ti N Uous Cons...mentioning

confidence: 99%

“…In other words, engagement in research is fluid and in constant movement and ethics are adjusted and attuned at every encounter. There are many spaces and times to (re)check, (re)connect, and (re)direct 18 . It is not about one decisive moment; it is not only about a ‘go’ or ‘not go’ and a ‘yes’ or ‘no’ as a result of the ethical procedures 41,42 …”

Section: Relational Ethics and Genuine Continuous Consentmentioning

confidence: 99%

“…There are many spaces and times to (re)check, (re)connect, and (re)direct. 18 It is not about one decisive moment; it is not only about a 'go' or 'not go' and a 'yes' or 'no' as a result of the ethical procedures. 41,42 On the eve of an international conference where one of the authors was going to present preliminary results about the participatory voice research, she sent a WhatsApp to Flora's mother.…”

Section: R E L Ationa L Ethic S a N D Ge N U I N E Con Ti N Uous Cons...mentioning

confidence: 99%

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Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs

Goidsenhoven

Schauwer

2022

Develop Med Child Neuro

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There is a need for qualitative participatory research involving children with intellectual disability and complex communication needs (CCNs), but procedural ethics cannot always adequately respond to the associated realities. To tackle this challenge, procedural ethics can be expanded with relational ethics to engage with consent and assent practices in participatory research projects. By drawing on several key incidents of participatory research with children with CCNs, we explore the complex moral spaces and times of ambivalent and iterative (dis)engagements within research processes. We reconceptualize the consent/assent terrain as a relationally constituted process, more aligned with the overall epistemological frameworks of participatory research and ensuring (disabled) children's ongoing and meaningful involvement in research. What this paper adds Reconfiguring informed consent and assent is an ongoing and unfinished process. Both relational and procedural ethics are needed. Informed consent and assent represent an ongoing process, not a one‐time event. Respect for research participants demands that they be included in the analysis of the data and writing of the results.

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“…Bei Ähnlich wie beim repeated consent wird beim ongoing consent davon ausgegangen, dass das Einverständnis über den Forschungsprozess wiederholt erfragt werden muss [89], da Patientinnen und Patienten im Verlauf neue Informationen gewinnen, die ihre Einwilligung zur weiteren Teilnahme beeinflussen können. Ongoing consent ist auch dann besonders relevant, wenn sich die kognitiven Fähigkeiten zum Informationsverständnis über den Zeitraum der Forschungsteilnahme ändern, z.…”

Section: Forschungsethikunclassified

DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr

et al. 2022

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ZusammenfassungVersorgungsforschung im letzten Lebensjahr beschäftigt sich mit der wissenschaftlichen Erfassung der Begleitung und Betreuung von schwerstkranken und sterbenden Menschen sowie ihrer An- und Zugehörigen. Patientinnen und Patienten in der letzten Lebensphase können unterschiedlichen Erkrankungsgruppen angehören, besondere Charakteristika aufweisen (z. B. Menschen mit kognitiver und komplexer Beeinträchtigung, ökonomischer Benachteiligung oder Migrationshintergrund) sowie in bestimmten Lebensphasen sein (z. B. Eltern minderjähriger Kinder, (hohes) Alter). Aus der besonderen Situation der Betroffenen sowie aus den Besonderheiten der Versorgung im letzten Lebensjahr ergibt sich das Erfordernis für ein eigenes Memorandum zur Versorgungsforschung in dieser Lebensphase. Dieses Memorandum beschreibt diesbezüglich ethische und methodische Spezifika sowie aktuelle Fragestellungen der Versorgungsforschung und wie diese angemessen mittels quantitativer, qualitativer und gemischter Methoden bearbeitet werden können. Es wurde von der Fachgruppe Palliativmedizin des Deutschen Netzwerk für Versorgungsforschung e.V. (DNVF) entsprechend der Vorgaben für DNVF-Memoranden erarbeitet.

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Implementing continuous consent in qualitative research

Cited by 32 publications

References 52 publications

Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities

Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities

Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs

DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr

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