Browsing by Author "Ross K"

Now showing 1 - 6 of 6
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    Developmental and epileptic encephalopathy: Personal utility of a genetic diagnosis for families
    (Wiley Periodicals LLC on behalf of International League Against Epilepsy, 2021-03) Jeffrey JS; Leathem J; King C; Mefford HC; Ross K; Sadleir LG
    Objectives Identifying genetic pathogenic variants improves clinical outcomes for children with developmental and epileptic encephalopathy (DEE) by directing therapy and enabling accurate reproductive and prognostic information for families. We aimed to explore the additional personal utility of receiving a genetic diagnosis for families. Methods Semi-structured interviews were conducted with fifteen families of children with a DEE who had received a genetic diagnosis. The interviews stimulated discussion focusing on the impact of receiving a genetic diagnosis for the family. Interview transcripts were analyzed using the six-step systematic process of interpretative phenomenological analysis (IPA). Results Three key themes were identified: “Importance of the label,” “Relief to end the diagnostic journey,” and “Factors that influence personal utility.” Families reported that receiving a genetic label improved their knowledge about the likely trajectory of the DEE, increased their hope for the future, and helped them communicate with others. The relief of finally having an answer for the cause of their child's DEE alleviated parental guilt and self-blame as well as helped families to process their grief and move forward. Delay in receipt of a genetic diagnosis diluted its psychological impact. Significance To date, the factors associated with the personal utility of a genetic diagnosis for DEEs have been under appreciated. This study demonstrates that identifying a genetic diagnosis for a child's DEE can be a psychological turning point for families. A genetic result has the potential to set these families on an adaptive path toward better quality of life through increased understanding, social connection, and support. Early access to genetic testing is important as it not only increases clinical utility, but also increases personal utility with early mitigation of family stress, trauma, and negative experiences.
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    Facebooking a different campaign beat: party leaders, the press and public engagement
    (SAGE Publications, 2020-11) Ross K; Fountaine S; Comrie M
    Social media are increasingly entrenched in politicians’ campaigning. Yet even as they become more ubiquitous, evidence suggests widely used platforms normalize rather than equalize the existing power dynamics of the political landscape. Our study of New Zealand’s 2017 general election uses a mixed-method approach including analysis of five Party Leaders’ (PLs) public Facebook wall posts, campaign coverage in four newspapers and interviews with Party workers and MPs. Our findings show PLs seldom interact with citizens and mostly use posts to promote campaign information. Citizens are more likely to ‘like’ a PL’s post than share or comment and there are important divergences between Party and media agendas. These findings demonstrate not only the importance of social media for Parties’ attempts to control messaging and disrupt journalistic interference, but also highlight that neither Parties nor citizens seem much invested in dialogue. However, understanding which posts excite citizen engagement may help all Parties more effectively promote participatory democracy globally.
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    How do youth, parents, and educators use discursive sexual scripts to make sense of youth engagement with internet pornography?
    (Taylor and Francis Group, 2022-12) Healy-Cullen S; Morison T; Ross K; Taylor JE
    In this article, we explore how culturally available sexual scripts are drawn on to make meaning of young people’s engagement with internet pornography (IP). We draw on a version of sexual scripting theory developed by feminist discursive scholars to perform a critical thematic analysis of 24 interviews with parents, educators, and young people. We identify three main scripts commonly drawn on by participants to make sense of youth engagement with IP, namely: a script of harm, a heterosexual script, and a developmentalist script. These scripts, often interweaving with one another, were deployed in various ways, firstly, as ‘risk talk’ and, secondly, as ‘resistant talk’. While both adults and youth engaged with dominant (‘risk’) and alternative (‘resistant’) talk, adults primarily positioned youth within ‘risk talk’. We show how alternative ‘resistant talk’ disrupts common, scripted ways of accounting for youth engagement with IP in a way that demonstrates more nuanced sexual subjectivities – particularly among youth – than the traditional media effects paradigm acknowledges. Importantly, our findings show how, within discursive restraints, essentialized gender constructions can be resisted to position youth as agentic sexual subjects.
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    Misinformation effects in an online sample: results of an experimental study with a five day retention interval
    (PeerJ Inc, 2021-11-18) Sievwright O; Philipp M; Drummond A; Knapp K; Ross K
    Traditional face-to-face laboratory studies have contributed greatly to our understanding of how misinformation effects develop. However, an area of emerging concern that has been relatively under-researched is the impact of misinformation following exposure to traumatic events that are viewed online. Here we describe a novel method for investigating misinformation effects in an online context. Participants (N = 99) completed the study online. They first watched a 10-min video of a fictional school shooting. Between 5 and 10 days later, they were randomly assigned to receive misinformation or no misinformation about the video before completing a recognition test. Misinformed participants were less accurate at discriminating between misinformation and true statements than control participants. This effect was most strongly supported by ROC analyses (Cohen’s d = 0.59, BF10 = 8.34). Misinformation effects can be established in an online experiment using candid violent viral-style video stimuli.
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    Single cases from multiple perspectives: a qualitative study comparing the experiences of patients, patients’ caregivers, surgeons, and nurses when bad news is delivered about cancer
    (Wolters Kluwer Health Inc, 2020-10) Matthews T; Baken D; Ross K
    Background: Qualitative literature on the experiences of those delivering and receiving bad news about cancer has revealed what these parties consider important during the process across many different patient cases. The current study aims to add to this understanding by employing a “linked case" study design to directly compare the perspectives of patients, their caregivers, and health care professionals (HCPs) involved in a series of single-patient cases of breaking bad news. Method: Semistructured interviews were conducted with 13 participants (5 patients, 4 caregivers, 2 surgeons, and 2 nurses) who formed 5 linked cases. Interviews were analyzed using interpretative phenomenological analysis and directly compared within each linked case. Results: Analyses identified 2 main superordinate themes. The first labeled “accurately perceiving and responding to needs," included HCPs recognizing and responding to patients’ and caregivers’ individual emotional and informational needs. The second labeled “carers fulfilling necessary roles," identified the various roles HCPs and patients’ caregivers took to satisfactorily meet patients’ needs. Conclusions: The findings suggest the importance of HCPs accurately perceiving and responding to patients’ and caregivers’ various needs and caregivers ability and willingness to fulfilling support roles in a way that aligns with their own resources and patients’ needs. This highlights the value of HCPs developing and applying interpersonal skills within bad news encounters, working as a team, and exploring caregivers’ resources for patient support.
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    Youth Encounters with Internet Pornography: A Survey of Youth, Caregiver, and Educator Perspectives
    (Springer Science+Business Media LLC, 2022-04-01) Healy-Cullen S; Taylor JE; Ross K; Morison T
    Despite international inquiry regarding young people’s encounters with Internet pornography (IP), there is a lack of knowledge about how their caregivers (parents or guardians) and educators perceive these encounters in comparison to young people. Such knowledge is critical to understanding the synergies and discrepancies that might exist between these key stakeholder groups (youth, caregivers and educators) and across genders, to subsequently inform how to best support youth in navigating IP. To this end, the present study describes youth (16–18-year olds) encounters with IP, as well as caregiver and educator perceptions of these encounters. An online survey was completed by 256 youth and 217 caregivers and educators recruited from nine schools with an existing investment in sexuality education in Aotearoa, New Zealand. Similar to global trends, this group of young New Zealanders were familiar with IP and patterns of encounters were gendered. However, there were varied understandings between stakeholder groups and across genders as to why and how these encounters occur. Understanding the ways youth encounter IP—and exploring how caregivers and educators perceive these encounters—serves as a springboard for future research that considers the broader socio-cultural context within which these perspectives are constructed.