Exploring the Experiences of Living With the Post-COVID Syndrome: A Qualitative Study.

INTRODUCTION: Many people experience persistent symptoms for more than 12 weeks following SARS-CoV-2 infection, which is known as post-COVID-19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in-depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences. METHODS: Nineteen semi-structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis. RESULTS: Five main themes were identified: 'Symptom dismissal', 'Lack of information and support', 'Life before and after Long COVID', 'Psychological impact' and 'Acceptance'. A shift overtime to self-management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men. CONCLUSION: Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well-being. We were not able to explore the experiences of people from non-conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions.

The impact of Chatbot-Assisted Self Assessment (CASA) on intentions for sexual health screening in people from minoritised ethnic groups at risk of sexually transmitted infections.

Background Sexually transmitted infections (STIs) present a significant global public health issue, with disparities in STI rates often observed across ethnic groups. The study investigates the impact of Chatbot-Assisted Self Assessment (CASA) on the intentions for sexual health screening within minoritised ethnic groups (MEGs) at risk of STIs as well as the subsequent use of a chatbot for booking STI screening. Methods A simulation within-subject design was utilised to evaluate the effect of CASA on intentions for STI/HIV screening, concern about STIs, and attitudes towards STI screening. Screening intentions served as the dependent variable, while demographic and behavioural factors related to STI/HIV risk were the independent variables. ANCOVA tests were conducted to measure the impact of CASA on these perceptions. Results Involving 548 participants (54% women, 66% black, average age=30years), the study found that CASA positively influenced screening intentions t (547)=-10.3, P t (544)=-4.96, P t (543)=-4.36, P Conclusion CASA increased motivations for STI screening intentions among ethnically diverse communities. The intervention's non-judgemental nature and the chatbot's ability to emulate sexual history-taking were critical in fostering an environment conducive to behavioural intention change. The study's high acceptability indicates the potential for broader application in digital health interventions. However, the limitation of not tracking actual post-intervention behaviour warrants further investigation into CASA's real-world efficacy.

'You Are Not Alone, We've Got You': Power Plays, Devotion, and Punishment on Healthy Eating and Pro-Eating Disorder Websites.

Healthy eating (HE) and pro-eating disorder (pro-ED) websites are popular sources of dietary and weight loss information, social support, and lifestyle inspiration. However, the discursive styles and language used by authors/moderators and users of these two site genres have not been widely studied or compared. Forty-three HE websites and twenty-four pro-ED websites were analysed using Fairclough's model of critical discourse analysis. Findings indicate that sites share common characteristics in terms of power relations played out by authors, 'successful' dieters, and those attending these sites. These power plays encourage moral and spiritual commitment to the care of one's body, with authoritative language used to support readers' loyalty and adherence to dietary plans. On HE sites, medicinal properties were attributed to 'clean' or 'pure' foods, whereas pro-ED sites conveyed their importance for weight reduction. Healthy eating sites were largely entrepreneurial, promoting products or themselves. Pro-eating disorder sites typically featured discussions of bodily disgust, the chastisement of others, and self-discipline in the name of 'Ana', such that dieting came to be framed as part of a devotional, often punitive, body project. On both sites, morality discourses were gendered around the thin female body and the 'ideal mother', with occasional praise for muscular male bodies. Our findings indicate how transitioning from healthy eating preoccupations to eating disorders may be facilitated by normalising discussions about restrictive dieting and the shaming of bodies, overseen by self-appointed diet 'experts' and 'buddies' online.

Battles over 'unruly bodies': Practitioners' interpretations of eating disorders and the utility of psychiatric labelling.

Our article offers a critical appraisal of psychiatric medical constructions of eating disorders (EDs) by highlighting the complexity of professional discourses, power plays, claims and counterclaims in ongoing struggles over 'unruly bodies.' Inductive thematic analysis of data from five studies was undertaken, covering thirty semi-structured interviews with UK health-care professionals working in the ED field. Professionals engaged in various struggles over eating disorders, which were compounded by the labelling process itself. Although person-centredness was valued, encounters with ED patients were frequently framed as outstandingly problematic in terms of treatment resistance, with clients' unruliness spurred on by ED competitiveness on social media and in-hospital rivalries. Paradoxically, the labelling of eating disorders created further expectations in terms of achieving specific weight levels and diagnostic labels, reportedly resulting in lay competition over who was sickest, which was mirrored by treatment priorities within an overstretched public health system. Narratives also highlighted interesting tensions between professionals rationalising their work with patients and acknowledging themselves as potentially vulnerable to societal pressures promoting EDs. Arguably, while lay narratives around EDs continue to be framed by authorities as unruly behaviours in deviant individuals, the gap between officially sanctioned and illicit ED discourses will only grow.

Masculinities and men's emotions in and after intimate partner relationships.

Men's emotions in intimate partner relationships have received little research attention. The current interpretive descriptive study included 30 Canadian-based men to address the research question: What are the connections between masculinities and men's emotions in and after intimate partner relationships? Three inductively derived themes included emergent distressing emotions wherein participants' predominance for holding in abeyance their concerns about the relationship manifested varying levels of emotional stoicism. Within this context most men denied or downplayed and did not express their emotions. When the relationship broke, men were overwhelmed by mixed and weighty break-up emotions comprising diverse and often-times discordant emotions, including sadness, shame, anger, regret and guilt, calling into question men's rationality for deciphering and expressing what was concurrently but inexplicably felt. Shame and anger were prominent emotions demanding the participant's attention to all that happened in and at the end of the relationship. In the third theme, understanding and transitioning after-burn emotions, participant's grief levered their efforts, including soliciting professional help for deconstructing, reframing and expressing their emotions in the aftermath of the partnership ending. The findings contextualise and in some instances counter claims about the utility of men's emotional stoicism by mapping participants' feelings in and after intimate partner relationships.

Evaluating an interactive acceptance and commitment therapy (ACT) workshop delivered to trained therapists working with cancer patients in the United Kingdom: a mixed methods approach.

BACKGROUND: SURECAN (SUrvivors' Rehabilitation Evaluation after CANcer) is a multi-phase study developing and evaluating an Acceptance and Commitment Therapy (ACT) intervention integrated with exercise and work when highly valued (thus we called the intervention ACT+), for people who have completed treatment for cancer but who have low quality of life. We developed a training programme for therapists working in different psychological services to be delivered over 2-3 days. Our aim was to evaluate the extent to which the training could improve therapists' knowledge and confidence to deliver ACT+ to cancer patients in a trial setting. METHODS: Three interactive workshops were delivered to 29 therapists from three clinical settings in London and in Sheffield. A mixed-methods approach was used. Questionnaires were designed to assess knowledge and confidence in using ACT+ with people who have low quality of life after cancer treatment. They were self-administered immediately prior to and after each workshop. Open text-based questions were used to elicit feedback about the workshops alongside a satisfaction scale. Semi-structured interviews were conducted with a purposive sample of therapists (n = 12) to explore their views about the training more deeply, and how it might be optimised. RESULTS: Quantitative analysis showed that knowledge of ACT, as well as confidence in using the ACT+ intervention in this setting increased significantly after training (28.6 and 33.5% increase in the median score respectively). Qualitative analysis indicated that most therapists were satisfied with the content and structure of the programme, valued the rich resources provided and enjoyed the practice-based approach. Potential barriers/facilitators to participation in the trial and to the successful implementation of ACT+ were identified. For some therapists, delivering a manualised intervention, as well as supporting exercise- and work-related goals as non-specialists was seen as challenging. At the same time, therapists valued the opportunity to be involved in research, whilst training in a new therapy model. CONCLUSIONS: Training can effectively improve the knowledge and confidence of therapists from different clinical backgrounds to deliver a modified ACT intervention to cancer patients in a trial setting.

The interactive dimensions of encounters in HIV care: From trauma to relational traumatic growth.

INTRODUCTION: A person-centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. METHODS: Twenty-two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. RESULTS: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. CONCLUSION: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). PATIENT OR PUBLIC CONTRIBUTION: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings.

A qualitative study exploring patient shadowing as a method to improve patient-centred care: 10 principles for a new gold standard.

BACKGROUND: In recent years, there has been an increased emphasis on patient experience as a dimension of quality in healthcare and subsequently a drive to understand care from the patient's perspective. Patient shadowing is an approach that has been used in service improvement projects, but its potential as a quality improvement (QI) method has not been studied in practical and replicable detail. OBJECTIVE: This new research aimed to produce clear guidance on patient shadowing for future Quality Improvement projects. METHODS: Qualitative interviews were conducted with 20 clinical and non-clinical participants of a national QI programme in UK, which focused on improving the experience of patients at the end of life. All participants had shadowed patients. Data were analysed using a thematic analysis. RESULTS: There were two broad themes: (i) The process of shadowing: how participants went about shadowing, adopting different approaches and making judgements about the care they observed and any challenges they had encountered. (ii) The impact of shadowing: on the engagement and motivation of those who shadowed and in terms of service changes to benefit patients and their families. CONCLUSION: The findings led to a new set of 'gold standard' principles to benefit both staff and patients where shadowing is used as a QI method. These, together with new guidance, will ensure that shadowing is conducted as a team exercise, that all those involved are more robustly prepared and supported and that its purpose as a method to improve patient experience will be better understood.

'We're welcomed into people's homes every day' versus 'we're the people that come and arrest you': The relational production of masculinities and vulnerabilities among male first responders.

Encouraging men to open-up about their feelings is a new cultural directive, yet little is known about how this works in practice, including to promote mental health. Ideals of hegemonic masculinity may be increasingly tolerating expressions of vulnerability in some areas of social life. However, the expression of vulnerability in paid work and/or career situations is regulated by organisational ideals and circumstances that may also produce distress. To address uncertainty in the literature, we investigated the experiences of men in traditionally male dominated professions, namely first responders (police, paramedics, and firefighters/rescue). Twenty-one UK based men of diverse ranks and experience currently working within first responder services participated in semi-structured telephone interviews. Distress was positioned as an inevitable part of the work. Yet, striking differences in institutionalised ways of expressing vulnerabilities differentiated the experiences of frontline workers, contributing to a wide spectrum of men's silence right through to relative openness about vulnerability, both in the workplace and domestic spheres. The findings provide importanat insights into how vulnerability is institutionally regulated, illuminating and contrasting how the possibilities for male vulnerabilities are socially produced.

HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation.

BACKGROUND: The introduction of effective antiretroviral treatment in the late 1990s led to the perception that HIV was a chronic but manageable condition. Nevertheless, stigma remains one of the major hurdles for people living with HIV (PLWH) to accessing healthcare and biomedical preventions. Thus, Fast Track Cities has set a target of zero HIV discrimination by 2030 as part of its strategy to end HIV transmission. METHODS: Fifty-three participants from the United Kingdom, including PLWH (n = 21, 40%), health and social care workers (n = 24, 45%), and charity workers and activists (n = 13, 25%), were recruited. Semi-structured interviews investigated stigma and discrimination, focusing on both before and after the widespread use of effective antiretroviral treatment in the late 1990s. Data were analysed using a thematic approach. RESULTS: Before effective antiretroviral treatment narratives were shaped by two main themes: 1) the media's role in influencing public opinion and contributing to misunderstandings of HIV transmission; and 2) personal experiences of HIV-related stigma, which for PLWH included incidents of physical violence and aggression, as well as fears of their HIV status being publicised. Contemporary narratives on stigma experiences were organised around four themes: 1) discrimination in healthcare settings; 2) stigma amongst men who have sex with men (MSM); 3) stigma towards African and Afro-Caribbean PLWH; and 4) the limits of change in public HIV-related knowledge and attitudes. Contemporary narratives indicated a reduction in enacted stigma, but continued anticipation of discrimination and self-reported shame, particularly in MSM and African and Afro-Caribbean PLWH. CONCLUSION: The nature of stigma against those with HIV has evolved. The intersection of PLWH and minority groups (e.g. MSM and African and Afro-Caribbean persons) may enhance anticipatory and internalised stigma, with some suggestion that this may contribute to reduced engagement in HIV care and prevention services. Our findings indicate the need for further research in this area, as well as proactive interventions with community groups to enhance knowledge of HIV.

How men step back - and recover - from suicide attempts: A relational and gendered account.

Men account for three-quarters of suicide deaths in the UK, yet we know little about how at-risk men construct their experiences of moving towards - and then subsequently stepping back from - suicide, nor the part played by relational factors therein. An inductive thematic analysis was used to examine narrative interviews with eleven UK men who self-reported serious thoughts, plans and up-to and including suicide attempts in progress, but who consciously decided against carrying out an attempt. Their accounts suggest a highly social process of movements towards and away from suicide (e.g. frustrated help-seeking). Stepping back from suicide represents not a discrete issue, but a linked process in suicidality and wider recovery. Here, the use of military metaphors in particular (e.g. waging war, fighting back) highlights the gendered nature of the issue. Additionally, our article illuminates a range of social relations and forces that circulate in and around suicidality, which itself is embedded in varying forms of relationality, normativity and gendered practices.

Barriers and facilitators to engagement with artificial intelligence (AI)-based chatbots for sexual and reproductive health advice: a qualitative analysis.

Background The emergence of artificial intelligence (AI) provides opportunities for demand management of sexual and reproductive health services. Conversational agents/chatbots are increasingly common, although little is known about how this technology could aid services. This study aimed to identify barriers and facilitators for engagement with sexual health chatbots to advise service developers and related health professionals. Methods In January-June 2020, we conducted face-to-face, semi-structured and online interviews to explore views on sexual health chatbots. Participants were asked to interact with a chatbot, offering advice on sexually transmitted infections (STIs) and relevant services. Participants were UK-based and recruited via social media. Data were recorded, transcribed verbatim and analysed thematically. Results Forty participants (aged 18-50 years; 64% women, 77% heterosexual, 58% white) took part. Many thought chatbots could aid sex education, providing useful information about STIs and sign-posting to sexual health services in a convenient, anonymous and non-judgemental way. Some compared chatbots to health professionals or Internet search engines and perceived this technology as inferior, offering constrained content and interactivity, limiting disclosure of personal information, trust and perceived accuracy of chatbot responses. Conclusions Despite mixed attitudes towards chatbots, this technology was seen as useful for anonymous sex education but less suitable for matters requiring empathy. Chatbots may increase access to clinical services but their effectiveness and safety need to be established. Future research should identify which chatbots designs and functions lead to optimal engagement with this innovation.

Sick of the Sick Role: Narratives of What "Recovery" Means to People With CFS/ME.

Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention, and analyzed via "constant comparison." The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the "sick role," with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of "normality."

'As soon as you've been there, it makes it personal': The experience of health-care staff shadowing patients at the end of life.

BACKGROUND: Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients. AIM: To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements. METHOD: A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically. RESULTS: Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention. CONCLUSION: With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.

The Changing Narratives of Death, Dying, and HIV in the United Kingdom.

Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently "successful ageing" became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.

Suicide Prevention From the Perspectives of Gay, Bisexual, and Two-Spirit Men.

Although gay, bisexual, and two-spirit men (GBTSM) experience high rates of suicidality, there have been few empirical studies of prevention initiatives and policies that could address or reverse this major social problem. This article reports on a photovoice study of 29 GBTSM who had a history of suicidality or lost a fellow GBTSM to suicide. We focused our analysis on participants' perspectives on suicide prevention. Participants described four key considerations for GBTSM suicide prevention: (a) recognizing and addressing enduring homophobia, biphobia, and mental illness stigma; (b) provision of low-barrier, long-term, and GBTSM-affirming counseling; (c) de-isolation through peer support and community connection; and (d) fostering creativity and cultural resilience. By engaging GBTSM affected by suicide through photographs that depict their experiences and points of view, in this study, we offer concrete recommendations to reduce suicidality among GBTSM.

Strategies for improving mental health and wellbeing used by older people living with HIV: a qualitative investigation.

Recent research into "successful ageing" and "resilience" in the context of ageing with HIV highlights older people living with HIV's (OPLWH) adaptations and coping strategies hitherto neglected by early research's emphasis on difficulties and challenges. Yet "resilience" and "successful ageing" are limited by their inconsistent definition, conflation of personal traits and coping strategies, normative dimension, and inattention to cultural variation and the distinctive nature of older age. This article thus adopts an interpretivist approach to how OPLWH manage the challenges to their mental health and wellbeing of ageing with HIV. Drawing on interviews with 76 OPLWH (aged 50+) living in the United Kingdom, we document both the strategies these participants use (for example, "accentuating the positive" and accessing external support) and the challenges to these strategies' success posed by the need to manage their HIV's social and clinical dimensions and prevent their HIV from dominating their lives. This points to (a) the complex overlaps between challenges to and strategies for improving or maintaining mental health and wellbeing in the context of ageing with HIV, and (b) the limitations of the "resilience" and "successful ageing" approaches to ageing with HIV.

Supported Decision-Making: The Expectations Held by People With Experience of Mental Illness.

Supported decision-making (SDM) is a principle guiding mental health service provision, which aims to improve people's ability to make informed decisions about their care. Understanding diverse individual needs is vital to its success. Based on 29 narrative interviews with people diagnosed with mental illness in Australia, we examine how participants reflected on their own experiences of SDM. We find that participants' conceptualization of mental health expertise, their own experiences and sense of agency, and their varying needs for dependence and independence influenced their relationships with mental health practitioners. These factors in turn shaped their expectations about SDM. Four narrative positions emerged: the "Inward Expert," the "Outward Entrustor," the "Self-Aware Observer," and the "Social Integrator." These positionings influenced the type or style of support that participants expected and considered most useful. Our findings are relevant to developing effective approaches to SDM that take into account service users' needs and preferences.

What influences quality of life in older people living with HIV?

BACKGROUND: People with HIV with access to treatment are growing older and living healthier lives than in the past, and while health improvements and increased survival rates are welcome, the psychological and social consequences and quality of life of ageing are complex for this group. Understanding how ageing, HIV and quality of life intersect is key to developing effective interventions to improve QoL. METHODS: One hundred people with HIV over the age of 50 (range 50-87, mean 58), were recruited through HIV community organizations, and clinics, and included men who have sex with men (MSM), and Black African and White heterosexual men and women. The WHOQOL-HIV BREF was used, as well as the Every Day Memory Questionnaire, and additional questions on anxiety and depression to supplement the WHOQOL. RESULTS: While most rated their quality of life (QoL) positively, bivariate analysis showed that better QoL (total score and most domains) was strongly associated with being a man; in a relationship; in paid employment; having higher level of income; not on benefits, and to a lesser degree with being MSM, having higher level of education, and diagnosed after the age of 40. Multivariate analysis showed that not being on benefits was the variable most consistently associated with better quality of life, as was being partnered. Concerns about everyday memory difficulties, and anxiety and depression scores were strong predictors of poorer quality of life. CONCLUSION: While the cross-sectional nature of the investigation could not establish that the associations were causal, the findings indicate that concerns about memory difficulties, anxiety and depression, as well as gender, ethnicity, financial factors, and relationship status, are important contributors to QoL in this group. These findings point towards the need for further research to clarify the mechanisms through which the factors identified here affect QoL, and to identify possible interventions to improve the QoL of older people living with HIV.