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Emilie reflects on her experience as a visiting DPhil student with the Interdisciplinary Research in Health Sciences (IRIHS) team, or in her words ‘the best three months’ of her DPhil study!
LifeAPP: self-monitoring of blood pressure after preterm preeclampsia: a randomized controlled feasibility trial.
OBJECTIVE: This was a pilot study to investigate the feasibility of developing a low-cost mobile technology-based intervention to encourage blood pressure (BP) monitoring and adoption of healthy lifestyle habits. METHODS: This was a prospective, controlled, randomized, non-blinding feasibility study that involved the use of electronic BP monitor and smartphone. Eligible participants in the intervention group were instructed to send the BP measurements to members of the LifeAPP team digitally from an application for smartphones linked to the BP device by Bluetooth and also via WhatsApp. The LifeAPP team sent feedback containing information as follows: a) safety of the BP levels; b) motivational messages aiming at maintaining self-monitoring; c) motivational messages aiming at the importance of developing healthy lifestyle habits. The primary outcome was feasibility: recruitment capacity, retention, and compliance with follow-up rates. RESULTS: Between 1 June 2020 and 24 January 2021, 48 participants were randomized to the intervention group, and 48 participants were randomized to the control group. The recruitment capacity of the participating centers proved to be adequate. Among the participants recruited for intervention group, 21 (43.7%) attended predefined visits at 3 months and only 12 (25%) attended predefined visits at 6 months. Similar loss to follow-up was observed in the control group. CONCLUSION: Despite successful recruitment of a cohort of women following preterm preeclampsia, there was no sufficient retention of participants. Therefore, new strategies for long-term follow-up of women who developed preeclampsia are needed before a further study in this group of patients can be contemplated.
Patient safety in remote primary care encounters: Multimethod qualitative study combining Safety i and Safety II analysis
Background Triage and clinical consultations increasingly occur remotely. We aimed to learn why safety incidents occur in remote encounters and how to prevent them. Setting and sample UK primary care. 95 safety incidents (complaints, settled indemnity claims and reports) involving remote interactions. Separately, 12 general practices followed 2021-2023. Methods Multimethod qualitative study. We explored causes of real safety incidents retrospectively ('Safety I' analysis). In a prospective longitudinal study, we used interviews and ethnographic observation to produce individual, organisational and system-level explanations for why safety and near-miss incidents (rarely) occurred and why they did not occur more often ('Safety II' analysis). Data were analysed thematically. An interpretive synthesis of why safety incidents occur, and why they do not occur more often, was refined following member checking with safety experts and lived experience experts. Results Safety incidents were characterised by inappropriate modality, poor rapport building, inadequate information gathering, limited clinical assessment, inappropriate pathway (eg, wrong algorithm) and inadequate attention to social circumstances. These resulted in missed, inaccurate or delayed diagnoses, underestimation of severity or urgency, delayed referral, incorrect or delayed treatment, poor safety netting and inadequate follow-up. Patients with complex pre-existing conditions, cardiac or abdominal emergencies, vague or generalised symptoms, safeguarding issues, failure to respond to previous treatment or difficulty communicating seemed especially vulnerable. General practices were facing resource constraints, understaffing and high demand. Triage and care pathways were complex, hard to navigate and involved multiple staff. In this context, patient safety often depended on individual staff taking initiative, speaking up or personalising solutions. Conclusion While safety incidents are extremely rare in remote primary care, deaths and serious harms have resulted. We offer suggestions for patient, staff and system-level mitigations.
Writing through Mess
This chapter includes a published version of a blog piece from the Disrupting Inequalities series, 'At the edge-lands of mental healthcare, whose vulnerability counts?' with and author’s commentary on ‘Writing Through Mess’. It argues that ‘placing’ problems and writing through their sociomaterial mess is a productive means to materialise banal inequalities. This kind of writing can arrange stories in space and time so that ethical and moral tensions within them are not resolved or tidied up, but rather held ‘in place’.
Suicide in South Asia: A scoping review
Background: Globally, suicide is an important cause of mortality. In low- and middle income settings, it is difficult to find unequivocal data to establish suicide rates. The objective of this review is to synthesize the reporting of suicide incidence in six south Asian countries. Methods: We conducted a scoping review combining peer-reviewed studies (PubMed, PsycINFO, EMBASE) with in-country searches for grey literature in Afghanistan, Pakistan, Sri Lanka, India, Nepal and Bangladesh. The review included mapping reported suicide rates, quality appraisals of the studies, use of definitions of suicide and means of committing suicide. Results: In total, 114 studies and reports were included in the review, including 50 peer-reviewed publications. Reported suicide rates varied widely from 0.43/100,000 to 331.0/100,000. The average suicide rate across studies was found to be high compared to the world average, however many studies were of poor quality or not representative. The majority of studies failed to explicitly define suicide (84% of the published articles and 92% of the grey literature documents). Poisoning and hanging were consistently the most common methods of committing suicide on the sub-continent. Conclusions: The reported suicide rates in South Asia are high compared to the global average, but there is a paucity of reliable data on suicide rates in South Asia. Reports are likely to diminish rather than exaggerate the magnitude of suicide rates. There is an urgent need to establish new, or evaluate existing, national suicide surveillance systems in the South Asian countries.
Collaboration between key populations in a global partnership for health and human rights: Lessons learned from ‘Bridging the Gaps’
Because HIV and AIDS key populations share common social-cultural factors challenging their sexual health and rights (e.g. stigma, criminalisation), there is an assumed benefit of collaborative programmes where various key populations work in solidarity. In this paper, we reflect on how partners collaborated in a complex alliance of over 100 different NGOs, representing and supporting three key populations–lesbian, gay, bisexual and transgender (LGBT) people, sex workers and people who use drugs–working across 16 countries. We used a multiple-method approach of participant observation, qualitative interviews, and a survey to explore the benefits, facilitators and challenges of collaboration. Results show that motivators for collaboration included being part of the larger funding structure with applied impacts, a repressive human rights context, and intersectionality. Barriers for collaboration included identity politics, stigma, and constraints regarding the appropriate timing of new collaborations. Finally, facilitators include practical support for engagement, the framing of human rights in a medical agenda, and recognition of implicit differences. We conclude that for building the capacity for collaboration among socially marginalised groups it is important to develop trust and the ability to recognise strength in difference beyond the initial identification of shared norms and common goals.
Demand and access to mental health services: A qualitative formative study in Nepal
Background: Nepal is experiencing a significant 'treatment gap' in mental health care. People with mental disorders do not always receive appropriate treatment due to a range of structural and individual issues, including stigma and poverty. The PRIME (Programme for Improving Mental Health Care) programme has developed a mental health care plan to address this issue in Nepal and four other low and middle income countries. This study aims to inform the development of this comprehensive care plan by investigating the perceptions of stakeholders at different levels of the care system in the district of Chitwan in southern Nepal: health professionals, lay workers and community members. It focuses specifically on issues of demand and access to care, and aims to identify barriers and potential solutions for reaching people with priority mental disorders. Methods. This qualitative study consisted of key informant interviews (33) and focus group discussions (83 participants in 9 groups) at community and health facility levels. Data were analysed using a framework analysis approach. Results: As well as pragmatic barriers at the health facility level, mental health stigma and certain cultural norms were found to reduce access and demand for services. Respondents perceived the lack of awareness about mental health problems to be a major problem underlying this, even among those with high levels of education or status. They proposed strategies to improve awareness, such as channelling education through trusted and respected community figures, and responding to the need for openness or privacy in educational programmes, depending on the issue at hand. Adapting to local perceptions of stigmatised treatments emerged as another key strategy to improve demand. Conclusions: This study identifies barriers to accessing care in Nepal that reach beyond the health facility and into the social fabric of the community. Stakeholders in PRIME's integrated care plan advocate strategic awareness raising initiatives to improve the reach of integrated services in this low-income setting.
Lived time and the affordances of clinical research participation
In this article, we address the problem of participation and the dominant focus on motivations in clinical research. We explore participation as a relational mode of ‘being in time’ in Alzheimer's dementia prevention—a field profoundly shaped by changing bodies through time, as well as promissory trends towards future-oriented preventative medicine. Analysis of interviews with older adults in a clinical trial platform demonstrates that what research ‘does’ or might (not) ‘do’ for participants emerges as temporalities of participants’ everyday lives become entangled with the possibilities, constraints and demands of biomedical ‘research time’. As well as consistent desires to help (future) others, we identify incidental possibilities for care that emerged from continued research participation. We argue that longitudinal research participation can productively be understood as a set of evolving affordances: whereby differing limits and possibilities for care and agency emerge in a world where dementia cannot be cured. Future trial participation is considered in terms of ‘therapeutic affordances’, which are likely to fluctuate as certain lived or imagined futures unfold. As such, we open up a conceptual space to think about why, how, and critically, when participation happens, as it emerges in relation to lived times of ageing and everyday life.
Intersecting Cultures in Deaf Mental Health: An Ethnographic Study of NHS Professionals Diagnosing Autism in D/deaf Children
Autism assessments for children who are deaf are particularly complex for a number of reasons, including overlapping cultural and clinical factors. We capture this in an ethnographic study of National Health Service child and adolescent mental health services in the United Kingdom, drawing on theoretical perspectives from transcultural psychiatry, which help to understand these services as a cultural system. Our objective was to analyse how mental health services interact with Deaf culture, as a source of cultural-linguistic identity. We ground the study in the practices and perceptions of 16 professionals, who have conducted autism assessments for deaf children aged 0–18. We adopt a framework of intersectionality to capture the multiple, mutually enforcing factors involved in this diagnostic process. We observed that professionals working in specialist Deaf services, or with experience working with the Deaf community, had intersectional understandings of assessments: the ways in which cultural, linguistic, sensory, and social factors work together to produce diagnoses. Working with a diagnostic system that focuses heavily on ‘norms’ based on populations from a hearing culture was a key source of frustration for professionals. We conclude that recognising the intersectionality of mental health and Deaf culture helps professionals provide sensitive diagnoses that acknowledge the multiplicity of D/deaf experiences.
“Ready for What?”: Timing and Speculation in Alzheimer’s Disease Drug Development
“Readiness cohorts” are an innovation in clinical trial design to tackle the scarcity of time and people in drug studies. This has emerged in response to the challenges of recruiting the “right” research participants at the “right time” in the context of precision medicine. In this paper, we consider how the achievement of “readiness” aligns temporalities, biologies, and market processes of pharmaceutical innovation: how the promise of “willing bodies” in research emerges in relation to intertwined economic and biological time imperatives. Drawing on long-term engagement with the field of Alzheimer’s disease prevention and interviews with researchers from academia and the pharmaceutical industry, we describe the discursive construction and practical arrangement of readiness. This paper contributes to understandings of temporal specificity, or “timing,” within prevention research and casts critical light on the way this specificity—the threshold for “trial readiness”—relates to an opaque and highly speculative drug development pipeline. Extending the study of biomedical potential, as that which holds promise but may not yet exist, we consider how absences operate in adaptive trials. By highlighting these absences (“ready for what?”), we outline an opportunity for socio-ethical research to intervene in the speculative gaps of drug development.
Placing precarity: access and belonging in the shifting landscape of UK mental health care
This paper engages with the notion of ‘embodied belonging’ through an ethnography of the social and material aspects of accessing mental health care in the UK. I focus on moments of access and transition in a voluntary sector organisation in London: an intercultural psychotherapy centre, serving a range of im/migrant communities. Whilst both ‘belonging’ and ‘place’ are often invoked to imply stability, I explore how material contexts of access and inclusion can paradoxically be implicated in the ongoing production of precarity—of unstable, uncertain, and vulnerable ways of being. A sociomaterial analysis of ethnographic material and visual data from two creative mapping interviews attends to material and spatial aspects of the centre and its transitory place in the urban environment. It demonstrates how these aspects of place became entangled in client experiences of access: uncertainties of waiting, ambivalence towards belonging to a particular client group, and questions around deservingness of care. This engendered an embodied and situated experience of ‘precarious belonging’. I therefore argue that precarity should be ‘placed’, both within the concept of embodied belonging, and ethnographically, within the material constraints, impermanence, and spatial politics of projects to include the excluded in UK mental health care.
Digital phenotyping and the (data) shadow of Alzheimer's disease
In this paper, we examine the practice and promises of digital phenotyping. We build on work on the ‘data self’ to focus on a medical domain in which the value and nature of knowledge and relations with data have been played out with particular persistence, that of Alzheimer's disease research. Drawing on research with researchers and developers, we consider the intersection of hopes and concerns related to both digital tools and Alzheimer's disease using the metaphor of the ‘data shadow’. We suggest that as a tool for engaging with the nature of the data self, the shadow is usefully able to capture both the dynamic and distorted nature of data representations, and the unease and concern associated with encounters between individuals or groups and data about them. We then consider what the data shadow ‘is’ in relation to ageing data subjects, and the nature of the representation of the individual's cognitive state and dementia risk that is produced by digital tools. Second, we consider what the data shadow ‘does’, through researchers and practitioners’ discussions of digital phenotyping practices in the dementia field as alternately empowering, enabling and threatening.