Narratives of Young People Living with a Diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a distressing and potentially debilitating condition. It can also be understood as a contested condition, surrounded by controversy about its nature, causes and treatment. Previous research indicates that those affected experience this climate of contestation as a troubling and discrediting assault, not only on the nature of their condition, but also on their identities. However, little attention has been paid to the voices of young people living with CFS/ME. This thesis extends a relatively small literature in new directions, focusing a constructionist, discursive narrative lens on the accounts of ten young people (aged 13-18) living with a diagnosis of CFS/ME. Narratives constructed during repeated interviews over a year, and drawing on multimodal materials collected by participants over that period, were analysed for their content, structure and performance, with reference to the local and broader contexts of their production. This analysis demonstrates that teenagers construct rich, multi-layered narratives with the potential to enhance understanding of their situation and broader features of the social world. As they speak of the onset of illness, attempts to live with enduring, unpredictable symptoms and their psychosocial consequences, and (for some) the possibility of “moving on” from the worst of illness, this analysis throws new light on how young people’s narratives can be understood as simultaneously constructing the condition (“M.E.”) and the identities of those involved (“me” and others), in ways that engage with, reflect and resist prevailing discourses. It is argued that the discursive contexts of CFS/ME and adolescence raise particular challenges for young people as they try to construct credible narratives that convey the full extent of their difficulties, while resisting stigmatising identities (eg, as “complaining”, “lazy” or otherwise “not normal”). This analysis highlights implications for them, their families and those who work professionally with them; and for the ongoing social construction of CFS/ME in young people

Family narratives of lives with persistent physical symptom conditions

© The Author(s) 2021. This article is distributed under the terms of the Creative Commons Attribution-Non Commercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/)Background: Literature reviews revealed no existing research on family narratives of living with multigenerational persistent physical symptom (PPS) conditions. The current study examined the personal and family narratives of one such family, from a relational/systemic perspective. Method: This research employed a qualitative research design, specifically using narrative methodologies to explore the experiences of a single family comprising two parents and their three children. All the children and their mother had a diagnosis of Ehlers–Danlos syndrome (EDS) but are specifically afflicted with PPS. The father is in good health. Using narrative inquiry, the family members were interviewed together and then individually. The interviews were audio-recorded, transcribed and analysed using narrative analysis in NVivo. Findings: Overarching narratives were stories of loss and sacrifice and stories of family unity. An exploration of the family’s negotiation of roles and identities is presented in the context of stigmatised illness. Discussion: Novel findings are presented in the context of the central role of the mother, the importance of family cohesion and the impact to family life resulting from living with stigmatised illness. Lastly, clinical implications and future research ideas are discussed.Peer reviewedFinal Published versio

Cutting Ties with Pro-Ana: A Narrative Inquiry Concerning the Experiences of Pro-Ana Disengagement from Six Former Site Users.

Websites advocating the benefits of eating disorders (“Pro-Ana”) tend to reinforce and maintain restrictive eating and purging behaviors. Yet remarkably, no study has explored individual accounts of disengagement from these sites and the associated meanings. Using narrative inquiry, this study sought to address this gap. From the interviews of six women, two overarching storylines emerged. The first closely tied disengagement to recovery with varying positions of personal agency claimed: this ranged from enforced and unwelcomed breaks that ignited change, to a personal choice that became viable through the development of alternative social and personal identities. A strong counternarrative to “disengagement as recovery” also emerged. Here, disengagement from Pro-Ana was storied alongside a need to retain an ED lifestyle. With “recovery” being just one reason for withdrawal from Pro-Ana sites, clinicians must remain curious about the meanings individuals ascribe to this act, without assuming it represents a step toward recovery.Peer reviewedFinal Accepted Versio

Life-threatening complications in childbirth: a discursive analysis of fathers' accounts.

Objectives: To explore the discursive construction and social actions achieved by accounts given by men following a birth in which the mother developed life-threatening complications. Background: Existing qualitative research employing interpretative thematic analysis of men's accounts of births in which the mother developed life-threatening complications highlights men's expressions of distress and marginalisation. This paper extends this, adopting different epistemological and analytic approaches to those accounts. Methods: Audio recordings and transcripts of semi-structured interviews collected by Hinton et al. were re-analysed using an approach informed by narrative analysis, discursive psychology and the discursive action model. Participants were four white British men whose partners experienced a maternal 'near-miss' event. Results: This analysis illustrates how men in this study draw on cultural narratives of 'normal' birth to construct experiences. Narrative constructions highlight separation of health professionals from laymen. These men use a discourse of self-reliance within families to construct their path to recovery. Conclusion: The strength of available narratives of birth and limited accessibility of alternative ones may impact how men tell their experience. Men in this study discursively attend to issues of power, agency and male identity, re-establishing entitlement to speak about their experience, but construct emotional support as unavailable to them

The management of acute venous thromboembolism in clinical practice - study rationale and protocol of the European PREFER in VTE Registry

Background: Venous thromboembolism (VTE) is a major health problem, with over one million events every year in Europe. However, there is a paucity of data on the current management in real life, including factors influencing treatment pathways, patient satisfaction, quality of life (QoL), and utilization of health care resources and the corresponding costs. The PREFER in VTE registry has been designed to address this and to understand medical care and needs as well as potential gaps for improvement. Methods/design: The PREFER in VTE registry was a prospective, observational, multicenter study conducted in seven European countries including Austria, France Germany, Italy, Spain, Switzerland, and the UK to assess the characteristics and the management of patients with VTE, the use of health care resources, and to provide data to estimate the costs for 12 months treatment following a first-time and/or recurrent VTE diagnosed in hospitals or specialized or primary care centers. In addition, existing anticoagulant treatment patterns, patient pathways, clinical outcomes, treatment satisfaction, and health related QoL were documented. The centers were chosen to reflect the care environment in which patients with VTE are managed in each of the participating countries. Patients were eligible to be enrolled into the registry if they were at least 18 years old, had a symptomatic, objectively confirmed first time or recurrent acute VTE defined as either distal or proximal deep vein thrombosis, pulmonary embolism or both. After the baseline visit at the time of the acute VTE event, further follow-up documentations occurred at 1, 3, 6 and 12 months. Follow-up data was collected by either routinely scheduled visits or by telephone calls. Results: Overall, 381 centers participated, which enrolled 3,545 patients during an observational period of 1 year. Conclusion: The PREFER in VTE registry will provide valuable insights into the characteristics of patients with VTE and their acute and mid-term management, as well as into drug utilization and the use of health care resources in acute first-time and/or recurrent VTE across Europe in clinical practice. Trial registration: Registered in DRKS register, ID number: DRKS0000479