Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study.

BACKGROUND: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life-limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. METHODS: We undertook a UK-based interview study with 35 individuals, including: 7 people living with genetically-mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. RESULTS: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open-ended, tailored support and information provision. CONCLUSIONS: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken-for-granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public-facing resource on the healthtalk.org website. PATIENT OR PUBLIC CONTRIBUTION: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel.

Experiences of predictive genetic testing in inherited motor neuron disease: Findings from a qualitative interview study.

Predictive genetic testing is increasingly available for individuals with a heightened risk of motor neuron disease (MND). However, little is known about how they decide whether or not to get tested, and how they experience this process. This paper reports findings from a constructivist grounded theory-informed interview study with 24 family members of people with identified or suspected inherited MND (iMND). Fourteen did not know their genetic status, and nine had decided to have predictive testing, of whom six tested positive for the pathogenic gene variant identified in their family and three tested negative. One additional person was identified as negative through a parent's negative result. This paper explores the diverse ways people approached testing, and the many factors and motivations involved, based on personal attitudes and goals, experiences of living with genetic risk, and wider family considerations and circumstances. Results were met with a range of emotions; whatever the outcome, the news disrupted each person's view of the future, and they adapted in their own way and time. Support after results was variable and a perceived lack of support impacted coping and the ability to move forwards. This paper situates findings against literature on other genetic conditions, highlighting experiences as grounded in the unique characteristics of iMND. Thus, it emphasizes the need for disease-specific guidelines and support structures around predictive genetic testing in this context. Understanding people's experiences and responding to these needs is particularly timely given the uptake of testing amongst this group is anticipated to rise with increasing access to genetic testing for people with MND, and gene-specific clinical trials.

Health information work and the enactment of care in couples and families affected by Multiple Sclerosis.

Given the considerable emphasis placed on informed choice, the management of health information has become an increasingly important part of living with chronic illness. This paper explores the intra-familial dynamics of managing health information in the context of chronic illness. Drawing on 77 interviews with people affected by Multiple Sclerosis in the UK (patients, partners, family members and close friends), we show how families develop their own idiosyncratic information practices, including the careful, at times strategic, seeking, sharing and withholding of information. We describe how one individual, most commonly either the patient or their partner, often takes primary responsibility for managing growing quantities of health information. Doing this is a complex task, yet its dynamics within the family unit remain invisible and unacknowledged. In this paper we: (a) stress the importance of understanding information management in chronic illness as a collective process across all those affected, patients as well as carers; (b) conceptualise the process of managing health information in this context as 'health information work'; and (c) analyse it as part of the wider care practices families engage in and as a form of care in its own right.

Biographical value: towards a conceptualisation of the commodification of illness narratives in contemporary healthcare.

Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives - be they in books, websites, television or other media - are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co-constitute each other in the notion of biographical value and in broader economies of illness experiences.

Caring for care: Online feedback in the context of public healthcare services.

People increasingly provide feedback about healthcare services online. These practices have been lauded for enhancing patient power, choice and control, encouraging greater transparency and accountability, and contributing to healthcare service improvement. Online feedback has also been critiqued for being unrepresentative, spreading inaccurate information, undermining care relations, and jeopardising professional autonomy. Through a thematic analysis of 37 qualitative interviews, this paper explores the relationship between online feedback and care improvement as articulated by healthcare service users (patients and family members) who provided feedback across different online platforms and social media in the UK. Online feedback was framed by interviewees as, ideally, a public and, in many cases, anonymous 'conversation' between service users and healthcare providers. These 'conversations' were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. Vital to this was the premise that providing feedback was an enactment of care - care for other patients, certainly, but also care for healthcare as such and even for healthcare professionals. Ultimately, feedback was understood as an enactment of care for the National Health Service (NHS), as symbolically encompassing all of the above. Putting these findings in dialogue with STS scholarship on care, we argue that, in this context, the provision of online feedback can be understood as a form of care that is, simultaneously, both directed at healthcare (in the round, including patients, professionals, services, organisations, and, of course, health itself) and part of healthcare. We conceptualise this as 'caring for care'. This conceptualization moves beyond dominant framings of online feedback in terms of 'choice' and 'voice'. It embeds online feedback within pre-existing healthcare systems, relations and moral commitments, foregrounds the mutuality of care relations, and draws attention to the affective labour of feedback practices.

The stories we tell: qualitative research interviews, talking technologies and the 'normalisation' of life with HIV.

Since the earliest days of the HIV/AIDS epidemic, talking about the virus has been a key way affected communities have challenged the fear and discrimination directed against them and pressed for urgent medical and political attention. Today, HIV/AIDS is one of the most prolifically and intimately documented of all health conditions, with entrenched infrastructures, practices and technologies--what Vinh-Kim Nguyen has dubbed 'confessional technologies'--aimed at encouraging those affected to share their experiences. Among these technologies, we argue, is the semi-structured interview: the principal methodology used in qualitative social science research focused on patient experiences. Taking the performative nature of the research interview as a talking technology seriously has epistemological implications not merely for how we interpret interview data, but also for how we understand the role of research interviews in the enactment of 'life with HIV'. This paper focuses on one crucial aspect of this enactment: the contemporary 'normalisation' of HIV as 'just another' chronic condition--a process taking place at the level of individual subjectivities, social identities, clinical practices and global health policy, and of which social science research is a vital part. Through an analysis of 76 interviews conducted in London (2009-10), we examine tensions in the experiential narratives of individuals living with HIV in which life with the virus is framed as 'normal', yet where this 'normality' is beset with contradictions and ambiguities. Rather than viewing these as a reflection of resistances to or failures of the enactment of HIV as 'normal', we argue that, insofar as these contradictions are generated by the research interview as a distinct 'talking technology', they emerge as crucial to the normative (re)production of what counts as 'living with HIV' (in the UK) and are an inherent part of the broader performative 'normalisation' of the virus.

"People power" or "pester power"? YouTube as a forum for the generation of evidence and patient advocacy.

OBJECTIVE: Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences. METHODS: Content analysis on the 100 most viewed videos from over 4000 identified in a search for 'CCSVI', and qualitative thematic analysis on popular 'channels' demonstrating patients' experiences. RESULTS: Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS. CONCLUSION: Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge. PRACTICE IMPLICATIONS: Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare.

Being differently the same: the mediation of identity tensions in the sharing of illness experiences.

The sharing of experiences between patients has become increasingly privileged as a source of knowledge and support in contemporary healthcare. Despite this, relatively little is known about the processes whereby people's experiences become, or fail to become, valued as sources of health-related knowledge in different contexts. Through a secondary analysis of 87 interviews conducted between 2006 and 2008 in the UK with people affected by motor neurone disease (46 interviews) and Parkinson's disease (41 interviews), we explore the identity work involved in turning other people's experiences into 'experiential knowledge' that can be shared between patients. Of particular interest is how the turning of others' experiences into knowledge is presupposed by negotiating a particular type of identity tension - what, drawing on the work of Paul Ricoeur (2003) on metaphor, we refer to as 'being differently the same'. We examine the way in which people living with motor neurone disease and Parkinson's disease spoke of managing this tension as part of the process of accessing and valuing other patients' experiences, both epistemologically and emotionally. Instead of treating others' experiences as a pre-given source of knowledge, we emphasise how experience comes to be embodied and articulated through different media - bodies, speech, text, and images. Moreover, we suggest that paying closer attention to these media provides opportunities for enhancing our understanding of how people with different chronic and/or terminal illnesses use or do not use different forms of peer support - and in particular online ones - as a source of health-related experiential knowledge. Some of the implications of this are discussed in the specific context of people diagnosed with incurable neurodegenerative conditions characterised by visible physical deterioration and associated emotional distress.

Metaphoric language and the articulation of emotions by people affected by motor neurone disease.

OBJECTIVE: To explore the use of metaphoric language to convey emotion in interviews with people affected by motor neurone disease, a progressive neurological condition that sits between chronic and terminal illness. METHODS: Secondary analysis of 46 interviews with people affected by motor neurone disease in the United Kingdom (35 individuals with the condition, 11 carers). RESULTS: Metaphor and figurative language was used to communicate the intensely emotional experiences of being diagnosed with and living with motor neurone disease. We focus on three pervasive themes that were threaded throughout the interviews: battling and fighting; the self under attack and journeying through a physical and emotional landscape. DISCUSSION: This secondary analysis of qualitative research interviews enriches our understanding of the articulation of emotion in motor neurone disease and adds to the literature on metaphor in chronic illness. Of particular interest is how the metaphors used contrasted with other conditions in the relative absence of metaphors of 'fighting' the disease. Furthermore, we analyse the ways in which participants used metaphors to give voice to emotions that are extremely difficult to articulate in 'literal' language, and how, in doing so, they blurred the distinction between 'physical' symptoms and 'emotional' states. Sensitivity to metaphors may help professionals communicate with people affected by motor neurone disease.