How Great a Risk Do You Take? A Qualitative Study Exploring Attitudes of Individuals with Friedreich Ataxia Toward Gene Therapy.

Scientists and pharmaceutical companies are working toward delivering gene therapy (GT) for Friedreich ataxia (FRDA). Understanding the views of people with lived experience of FRDA and their parents toward GT is essential to inform trial design and identify potential barriers to participation in clinical trials. The goals of this study were to identify the attitudes toward GT held by individuals with FRDA and parents of individuals with FRDA, and to explore how these may impact future trials for this condition. Audiorecorded, semistructured, qualitative interviews with 19 Australians explored experiences of FRDA, knowledge about clinical trials, views on GT, including risks and benefits, and potential barriers to participation in trials. Participants included thirteen individuals living with FRDA aged between 15-43 years, and six parents of children with FRDA aged 4-12 years of age. Thematic analysis of the interviews identified six main themes. Findings from this study indicate there is strong desire for information regarding GT in FRDA, however the current level of uncertainty around GT makes decision making challenging. The desire to maintain functional status and avoid additional risk of deterioration from an investigational treatment was apparent. Importantly, neurological targets were identified as preferred for GT trials. Further research is required to identify if attitudes and perceptions differ according to geographical location and disease stage.

Participatory Design and Evaluation of the "Stem Cells Australia" Website for Delivering Complex Health Knowledge: Mixed Methods Study.

BACKGROUND: The internet has become a commonly used information source for people seeking to understand their health care options. However, inconsistent representation about what stem cell treatments are available and from whom, coupled with the lack of transparency about what has been shown to work or is even safe, can distract and mislead users. Given these challenges, there is a need to develop effective evidence-based tools for delivering information about health care options involving stem cells. OBJECTIVE: A need to redesign an existing website in Australia was identified to provide trustworthy information about stem cell research and to counter misinformation. Using a participatory design approach to generate an understanding of what information users need for stem cell treatments, the Stem Cells Australia website serves as a case study for the development and evaluation of websites delivering complex messages about science and health. METHODS: This study comprised 3 steps. First, a focus group and several one-on-one interviews with a purposive sample of users (n=12) were conducted to identify their needs and requirements. Second, we designed a new version of the website based on findings from the focus group and interviews. Finally, for evaluating the participatory design process, we collected 180 days of Google Analytics data for both the original and redesigned versions (90 days for each) and compared their differences using 2-sample z tests. RESULTS: The feedback from participants was grouped into 3 themes-needed and unwanted information, how and where to obtain information, and their information preferences. These were translated into requirements for rebuilding the website. The redesigned version reached users in other continents, despite the daily numbers of users (-61.2%; P<.001) and sessions (-61.7%; P<.001) decreasing. The redesigned version also showed substantial decrease in daily bounce rate (-97.2%; P<.001), significant increase in the daily average of page reads per session (+110.8%; P<.001), and long daily average for session duration (+22.9%; P=.045). Navigation flow analysis showed more traffic toward web pages related to health conditions in the redesigned version. CONCLUSIONS: Websites about stem cell research need to provide content for vulnerable global audiences. Participatory design that addresses knowledge gaps and information needs can produce better performance and engagement, which can be evaluated using Google Analytics, a common web analytics tool used by many websites. Learnings for improving the metrics regarding website identity, research updates, and clinical trials are concluded, which can inform the future design of websites seeking to engage users and provide reliable and accessible science and health information including but not limited to stem cell research and therapies.

Supporting pregnant nursing students in graduate entry-to-practice nursing programs: A case study.

BACKGROUND: Nurses are vital in improving population health globally. Yet, some female students leave nursing programs due to pregnancy and early motherhood, which contributes to a global shortage in the nursing workforce. OBJECTIVES: To evaluate an existing support mechanism and identify unmet needs of nursing students during pregnancy and transition to motherhood in the academic environment, including clinical placement. DESIGN: Qualitative research, case study design. SETTINGS: One university in Australia, interviews conducted in December 2020-February 2021 prior to the COVID-19 pandemic. PARTICIPANTS: Students who were pregnant or transitioned to motherhood during their enrolment in a pre-registration Masters level nursing program. METHOD: Data collected through semi-structured interviews was thematically analysed. RESULTS: While ten students, who were pregnant or had a baby during the period of June 2017 to December 2020 expressed interest in participating in the study, six students were interviewed about their experiences, challenges and views on academic supports provided during pregnancy and early motherhood. The following themes were identified: 1) Disclosing pregnancy: Barriers and supports; 2) Navigating placements, assessments and exams; 3) Studying in early motherhood 4) Stressors and pressures specific to international students. CONCLUSION: Opportunities for interventions at critical stages for students are identified, including barriers to the take up existing supports. Key recommendations are outlined to enhance the study experience of nursing students during pregnancy and early motherhood.

Navigating the cartographies of trust: how patients and carers establish the credibility of online treatment claims.

Digital media offer citizens novel ways of 'enacting' health and illness, and treatment and care. However, while digital media may so 'empower' citizens, those searching for credible information will be confronted with various, often-conflicting claims that may have 'disempowering' effects. This article uses Gieryn's concept of the 'cultural cartography' to explore the criteria that patients and carers employ in establishing the credibility of information on alleged treatments. Drawing on data from interviews with Australian patients and carers who have travelled or considered travelling abroad for unproven commercial stem cell treatments, the article examines how individuals assess rival sources of epistemic authority - science-based and non-science-based - as they search for credible information. As we argue, in a context where conventional treatment options are perceived to be limited or non-existent - which is likely to be the case with those suffering severe, life-limiting conditions - and the credibility of sources uncertain, matters of opinion and belief are prone to being interpreted as matters of fact, with potentially far-reaching implications for citizens' health. Revealing the mechanisms by which individuals ascribe credibility to health information, we conclude, has become crucial as digital media assume a growing role in health and healthcare and governments encourage citizens to become 'digitally literate'.

Citizens' use of digital media to connect with health care: Socio-ethical and regulatory implications.

Digital technologies promise to transform practices of health, medicine and health care and 'power' economies. In expectation of their presumed future benefits, governments in recent years have invested heavily in new technology initiatives and have sought to engender 'digital literacy' among citizens. This article introduces papers and expands on themes arising from a special issue that explores the socio-ethical and regulatory implications of citizens' use of digital media to connect with health care. We set the scene by examining the promissory discourse that attaches to digital technologies as applied to health care, and its role in shaping actions, and then consider the longer term prospects and implications of digitalisation for conceptions of citizenship and established categories and distinctions. As we argue, given the history of new technologies, the longer term implications of digitalisation are likely to differ significantly from those envisaged. Digital technologies promise radical positive disruption. Yet many uncertainties accompany their development and future applications and likely implications. Making reference to papers in the special issue and the wider literature, the article considers the prospects of digitalisation in medicine and health care in light of the colonisation of the Internet by powerful technology companies, the shift in capitalist economies from processes of production to technologies of prediction, evidence of inequalities in access to the Internet and related devices, and the growing number of data breaches involving personal health information. We draw attention to the failure of governments to engage citizens in substantive deliberations about digitalisation and its future potential implications and the ultimate democratic deficit that this represents. We ask, what does it mean to 'regulate' digital media in a context in which data are widely viewed as the 'new oil'? While we have no straightforward answers, we suggest that recent legislative efforts (e.g. General Data Protection Regulation in Europe) and growing calls for 'algorithmic accountability' have the potential to temper the more harmful aspects of digitalisation.

The politics of evidence in online illness narratives: An analysis of crowdfunding for purported stem cell treatments.

This article addresses the growing trend of crowdfunding for unproven stem cell-based treatments. Our analysis uses quantitative and qualitative data collected from two popular fundraising sites to examine how these sites are used to fund purported stem cell 'treatments' or 'therapies'. In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, we consider the breakthrough restitution story as a key narrative that campaign organisers use to solicit donations. We argue that crowdfunding is a rapidly growing digital space where 'truths' about experimental treatments are constituted and a politics of evidence is unfolding. These developments are to the potential financial benefit of crowdfunding platforms and businesses offering unproven stem cell-based interventions, and to the potential detriment of patients and their supporters.

Contact us for more information: an analysis of public enquiries about stem cells.

Aim: This study examines online enquiries received by two prominent stem cell science initiatives operating in different geographical jurisdictions. Materials & methods: Combined quantitative and qualitative analysis undertaken of internet-based queries (n = 1047) received by Stem Cells Australia and EuroStemCell from members of the public over a two-year period (May 2014-2016). Results: Findings reveal striking similarities between the two datasets and highlight the range of uncertainties, priorities and needs of those seeking information about stem cells online. Conclusion: Sustained and in-depth tailored guidance is needed to effectively meet the diverse stem cell-related information-based needs of communities internationally. Such efforts should be prioritized by regenerative medicine research initiatives and organizations, given the trust and hope diverse publics appear to place in these groups.

Tackling Ethical Challenges of Premature Delivery of Stem Cell-Based Therapies: ISSCR 2018 Annual Meeting Focus Session Report.

Clinical uses of unproven stem cell-based interventions abound, yet many patients may be harmed by receiving them, raising complex ethical, economic, and societal concerns. Regulators, scientists, clinicians, professional societies, and patient advocacy groups need to collaboratively articulate expectations related to the proper development and delivery of stem cell-based therapies.

'No one here's helping me, what do you do?': addressing patient need for support and advice about stem cell treatments.

AIM: This article examines how those who contemplate purported stem cell treatments (SCTs) negotiate available information sources and the adequacy of current approaches to guidance and support. MATERIALS & METHODS: Qualitative interviews undertaken with people who had contemplated or undergone purported SCTs for a range of conditions (n = 24 and n = 27, respectively), as well as professionals who are frequently asked about SCTs (n = 20) were analyzed. RESULTS: Our findings reveal the difficulties for individuals in discriminating between different sources of information on SCTs and the limitations of current responses. CONCLUSION: In the context of contending information about SCTs informal ('accidental') advisors potentially play a crucial role in supporting patients. Additional approaches are also required to better address patients' needs.

"My dirty little habit": Patient constructions of antidepressant use and the 'crisis' of legitimacy.

Discontents surrounding depression are many, and include concerns about a creeping appropriation of everyday kinds of misery; divergent opinions on the diagnostic category(ies); and debates about causes and appropriate treatments. The somewhat mixed fortunes of antidepressants - including concerns about their efficacy, overuse and impacts on personhood - have contributed to a moral ambivalence around antidepressant use for people with mental health issues. Given this, we set out to critically examine how antidepressant users engage in the moral underpinnings of their use, especially how they ascribe legitimacy (or otherwise) to this usage. Using a modified constant comparative approach, we analyzed 107 narrative interviews (32 in UKa, 36 in UKb, 39 in Australia) collected in three research studies of experiences of depression in the UK (2003-4 UKa, and 2012 UKb) and in Australia (2010-11). We contend that with the precariousness of the legitimacy of the pharmaceutical treatment of depression, participants embark on their own legitimization work, often alone and while distressed. We posit that here, individuals with depression may be particularly susceptible to moral uncertainty about their illness and pharmaceutical interventions, including concerns about shameful antidepressant use and deviance (e.g. conceiving medication as pseudo-illicit). We conclude that while people's experiences of antidepressants (including successful treatments) involve challenges to illegitimacy narratives, it is difficult for participants to escape the influence of underlying moral concerns, and the legitimacy quandary powerfully shapes antidepressant use.

Social class, anxieties and mothers' foodwork.

In the context of concerns about childhood obesity, mothers are placed at the forefront of responsibility for shaping the eating behaviour and consequently the health of their young children. This is evident in a multitude of diverse sites such as government reports, health promotion materials, reality TV shows and the advice of childcare nurses and preschools. These sites produce a range of resources available to mothers to draw on to constitute themselves as mothers in terms of caring for their children's health. Drawing on a qualitative study of mothers recruited through three Australian preschool centres, this article examines how the working-class and middle-class mothers of preschool-aged children engage with knowledge about motherhood, children and health and how those engagements impact on their mothering, their foodwork and their children. We argue that, unlike the working-class mothers pathologised in some literature on obesity, these working-class mothers demonstrated a no-nonsense (but still responsibilised) approach to feeding their children. The middle-class mothers, on the other hand, were more likely to engage in practices of self-surveillance and to demonstrate considerable anxieties about the appropriateness of their practices for their children's current and future health.

Starting antidepressant use: a qualitative synthesis of UK and Australian data.

OBJECTIVE: To explore people's experiences of starting antidepressant treatment. DESIGN: Qualitative interpretive approach combining thematic analysis with constant comparison. Relevant coding reports from the original studies (generated using NVivo) relating to initial experiences of antidepressants were explored in further detail, focusing on the ways in which participants discussed their experiences of taking or being prescribed an antidepressant for the first time. PARTICIPANTS: 108 men and women aged 22-84 who had taken antidepressants for depression. SETTING: Respondents recruited throughout the UK during 2003-2004 and 2008 and 2012-2013 and in Australia during 2010-2011. RESULTS: People expressed a wide range of feelings about initiating antidepressant use. People's attitudes towards starting antidepressant use were shaped by stereotypes and stigmas related to perceived drug dependency and potentially extreme side effects. Anxieties were expressed about starting use, and about how long the antidepressant might begin to take effect, how much it might help or hinder them, and about what to expect in the initial weeks. People worried about the possibility of experiencing adverse effects and implications for their senses of self. Where people felt they had not been given sufficient time during their consultation information or support to take the medicines, the uncertainty could be particularly unsettling and impact on their ongoing views on and use of antidepressants as a viable treatment option. CONCLUSIONS: Our paper is the first to explore in-depth patient existential concerns about start of antidepressant use using multicountry data. People need additional support when they make decisions about starting antidepressants. Health professionals can use our findings to better understand and explore with patients' their concerns before their patients start antidepressants. These insights are key to supporting patients, many of whom feel intimidated by the prospect of taking antidepressants, especially during the uncertain first few weeks of treatment.

Between hope and evidence: how community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments.

Stem cell science provides an exemplary study of the 'management of hope'. On the one hand, raising 'hopes' and expectations is a seen as a necessary aspect of securing investment in promising innovative research. On the other, such hyperbole risks raising hopes to a level that may lead people to undertake undue risks, which may ultimately undermine confidence in medical research. In this context, the 'management of hope' thus involves the negotiation of competing claims of truth about the value and safety of particular treatments and about the trustworthiness of providers. Using Gieryn's concept of boundary-work, this article examines the means by which this work of 'managing hope' is undertaken. Drawing on data collected as part of our study that investigated the perspectives of those who are consulted by patients and their carers about stem cell treatments, we explore how these community advisors ­ both scientists and clinicians with a stake in stem cell research and representatives from patient advocacy groups ­ demarcate the boundary between legitimate and illegitimate treatments. In particular, we examine how these actors rhetorically use 'evidence' to achieve this demarcation. We argue that analysing accounts of how advisors respond to patient enquiries about stem cell treatments offers a window for examining the workings of the politics of hope within contemporary bioscience and biomedicine. In conclusion, we emphasize the need to re-conceptualize the boundary between science and non-science so as to allow a better appreciation of the realities of health care in the age of medical travel.