Researching Reflexively With Patients and Families

Collier, Aileen; Wyer, Mary

doi:10.1177/1049732315618937

Cited by 45 publications

(20 citation statements)

References 48 publications

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“…On one hand, participants are encouraged to use their critical, confessional, and authoritative/pedagogical voices to clearly establish themselves as legitimate partners in the study [ 27 , 28 ]. On other hand, through reflexivity, they come to new understandings of their practices and behaviors, prompting some to change or develop new strategies [ 29 - 31 ], potentially increasing their identification with the cohort studies and retention. It is also particularly advantageous to prompt recall from multiple subjects concerning their life events that the researcher cannot join as a participant observer.…”

Section: Methodsmentioning

confidence: 99%

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-Situated Qualitative Study

et al. 2020

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Background Cohort studies represent a strong methodology for increasing one’s understanding of human life-course development and etiological mechanisms. Retention of participants, especially during long follow-up periods, is, however, a major challenge. A better understanding of the motives for participation and attrition in cohort studies in diverse sociogeographic and cultural settings is needed, as this information is most useful in developing effective retention strategies. Objective This study aims to improve our understanding of participation and attrition phenomena in a European cohort study of very preterm/very-low-birth-weight (VPT/VLBW) infants from various sociogeographic and cultural settings to better understand variability and ultimately contribute to developing novel and more “in-context” strategies to improve retention. Methods This study uses a triangulation of multisituated methods to collect data on various cohorts in the Research on European Children and Adults Born Preterm (RECAP) network, which include focus group discussions, individual semidriven interviews, and a collaborative, reflexive visual methodology (participant-generated VideoStories) with relevant key actors involved with these cohort studies such as adult participants, parents (caregivers), cohort staff, health care professionals, and academic researchers. The methodological strategy aims to provide a shared flexible framework of various qualitatively driven methods to collect data on VPT/VLBW adult and child cohorts, from which research partners may choose and combine those most pertinent to apply in their own specific contexts. Data from all sources and sites will be submitted to a triangulation of phenomenological thematic analysis with discourse analysis. Results As of January 2020, in this study, we enrolled 92 participants variously involved with child and adult RECAP partnering cohorts from six countries. Multisite enrollment and data collection are expected to be completed in all seven study settings by June 2020. Findings will be reported in future publications. Conclusions Qualitative research methods are a useful complement for enriching and illuminating quantitative results. We expect that opting for a multisituated study approach addressing the interplay of the lived experience of individuals in both researcher and researched stances of particular cohort study settings will contribute to filling some gaps in the understanding of participation variability and effectiveness of different implemented strategies in context. Moreover, health research subjects have traditionally been positioned as passive objects of study rather than active participants, even though they have the greatest stake in improving health care policies and practices. Including collaborative methods allows us to counteract the “top-down” model by handing over some research control to the very people who are providing the data on which research findings will be based while also acknowledging the value of their involvement. International Registered Report Identifier (IRRID) DERR1-10.2196/14997

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Section: Methodsmentioning

confidence: 99%

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-Situated Qualitative Study

et al. 2020

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“…The method involves video recording episodes of clinical care, conducted in healthcare settings in real time, known as video ethnography and showing these video recordings back to participants, known as video-reflexivity to elicit their responses and collectively identify practice change. 33 VRE is a strength-based method and is about opening up or exnovating healthcare and recognising what works well in practice. 29 Exnovation is more than visualising a clinical episode of care, as its impact is evident in the videoreflexive sessions where clinical care is made explicit.…”

Section: Video-reflexive Ethnographymentioning

confidence: 99%

Person-centred data collection methods to embed the authentic voice of people who experience health challenges

et al. 2020

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“…This range of visibility and explication of researcher oversight/process is necessary because of the different audiences (e.g., clinical or lay) and the different aspects of the research projects to share. According to Collier and Wyer [38], multiplicity of positionings, as a collective, might come closer to honestly representing the research than any single account could.…”

Section: Insights and Recommendationsmentioning

confidence: 99%

Uplifting Voices and Images of Research Participants: Issues in Video Dissemination

Weaver¹,

Spiers²

2018

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Video technology is increasingly popular for disseminating research results because its multi-sensory avenues for communication provide richer information than is often available in printed reports. Despite this advantage, issues inherent in video-based dissemination research have not been well articulated in nursing literature. In this article, issues of power, representation, participant autonomy, confidentiality, informed consent, intellectual property, and commercial use and profits are described and critically analyzed. The discussion is contextualized with examples from two original qualitative research projects involving women recovering from eating disorders and adolescents living with diabetes. Recommendations for future video research include giving as much control as possible to participants through negotiation of consent, confidentiality, and copyright ownership issues on an ongoing case by case basis.

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Researching Reflexively With Patients and Families

Cited by 45 publications

References 48 publications

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-Situated Qualitative Study

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-Situated Qualitative Study

Person-centred data collection methods to embed the authentic voice of people who experience health challenges

Uplifting Voices and Images of Research Participants: Issues in Video Dissemination

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