Ethical, Practical, and Methodological Considerations for Unobtrusive Qualitative Research About Personal Narratives Shared on the Internet

Burles, Meridith; Bally, Jill

doi:10.1177/1609406918788203

Cited by 42 publications

(38 citation statements)

References 30 publications

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“…To protect confidentiality and privacy, their data were deidentified. To avoid traceability via online search engines, specific details of music performances are omitted in publication, the cultural origins of the music referred to in general terms, and quotations are paraphrased, as per a fabrication approach to qualitative online research described by Burles and Bally (2018) .…”

Section: Methodsmentioning

confidence: 99%

“Music Has No Borders”: An Exploratory Study of Audience Engagement With YouTube Music Broadcasts During COVID-19 Lockdown, 2020

2021

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This exploratory study engages with eight case studies of music performances broadcast online to investigate the role of music in facilitating social cohesion, intercultural understanding and community resilience during a time of social distancing and concomitant heightened racial tensions. Using an online ethnographic approach and thematic analysis of video comments, the nature of audience engagement with music performances broadcast via YouTube during COVID-19 lockdown of 2020 is explored through the lens of ritual engagement with media events and models of social capital. The eight case studies featured virtual choirs, orchestras and music collaborations of various genres, including classical, pop and fusion styles drawing from European, Asia Minor, South African, West African, North African, Arabic, South Asian, and East Asian cultural origins. Five overarching themes resulted from thematic analysis of video comments, including Interaction, Unity, Resilience, Identity, and Emotion. The paper contributes important theorisation that ritual engagement and social learning fosters intercultural understanding through engaging with music both cognitively and emotionally, which can in turn shape both individual and collective identity. Online platforms provide scope for both bonding and bridging opportunities. Community resilience is supported through the sharing of knowledge, sustaining music practice during social distancing, as well as emotional support shared among audience participants, with potential wellbeing outcomes.

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Section: Methodsmentioning

confidence: 99%

“Music Has No Borders”: An Exploratory Study of Audience Engagement With YouTube Music Broadcasts During COVID-19 Lockdown, 2020

2021

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“…These contributors are not direct participants of our study. However, the study of unsolicited autobiographical narratives is a unique research space with particular ethical issues relating to recruitment [ 47 ]. To establish the ethical position of this study, we refer to the Australian National Statement on Ethical Conduct in Human Research (2007-Updated 2018) [ 48 ], which indicates that privacy concerns arise when the proposed access to, or use of, the data or information does not match the expectations of the individuals from whom this data or information was obtained or to whom it relates.…”

Section: Methodsmentioning

confidence: 99%

Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study

Lamprell¹,

Pulido²,

Tran³

et al. 2021

JMIR Res Protoc

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Background Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID) DERR1-10.2196/25056

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“…The online stories (or blog posts) on The Mighty were written for a purpose other than research and an audience other than a researcher and were, therefore, more naturally occurring compared with researcher‐driven data collection (see von Benzon 2018; Burles and Bally 2018; Hookway 2008). Because bloggers themselves determined what stories to tell, their choices indicated what topics and experiences were significant to them (Lamprell and Braithwaite 2018:1565).…”

Section: Methodsmentioning

confidence: 99%

Online Somatic Work: the Case of Sensory Processing Disorder

Medley-Rath

2020

Sociological Inquiry

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This study examines how people affected by sensory processing disorder (SPD) make their sensory experience visible and meaningful in their unprompted public blog‐writing. I analyzed 66 online narratives written by 44 people affected by SPD. The non‐normative sensory responses of people with SPD are invisible but may result in socially disapproved and challenging behavior (e.g., extreme picky eating). Minimal social and medical recognition of this condition puts people affected by SPD in the position of needing to explain their experience and account for behaviors that are culturally coded as inappropriate. To understand how people affected by SPD communicated their experience to unknown readers, I used techniques associated with grounded theory to analyze their unprompted narratives on The Mighty. Bloggers use several strategies to define SPD for readers, including making use of expert definitions, examples, and comparisons with normative sensory experience, and negative definitions that differentiated SPD from other disorders, normal childhood behavior, and misbehavior. Bloggers used these definitional strategies in conjunction with discourses of normal childhood, good parenting, and biomedicine to communicate and legitimize their experience. Moreover, bloggers did not challenge normative expectations of the human senses but instead reinforced conventional notions about how the senses are supposed to work.

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Ethical, Practical, and Methodological Considerations for Unobtrusive Qualitative Research About Personal Narratives Shared on the Internet

Cited by 42 publications

References 30 publications

“Music Has No Borders”: An Exploratory Study of Audience Engagement With YouTube Music Broadcasts During COVID-19 Lockdown, 2020

“Music Has No Borders”: An Exploratory Study of Audience Engagement With YouTube Music Broadcasts During COVID-19 Lockdown, 2020

Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study

Online Somatic Work: the Case of Sensory Processing Disorder

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