Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement.

BACKGROUND: Understanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of 'quality improvement' when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services. METHODS: We used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach. RESULTS: When patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients' rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions. CONCLUSIONS: When including patient voices in measuring and defining 'quality', governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care

Spaces for Citizen Involvement in Healthcare: An Ethnographic Study.

This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens' actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: 'plotting', 'transient combination' and 'interconnecting'. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants' acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare

Correction to: Improving implementation of health promotion interventions for maternal and newborn health.

Following publication of the original article [1], it was noted that the formatting of the authors' manes was inconsistent with that of the other articles in the series

Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement

This article investigates how healthcare professionals articulate the relationship between patient experience and ‘evidence’, creating hybrid forms of knowledge. We propose a Bakhtinian dialogical framework to theorise this process. Drawing on ethnographic work from patient involvement initiatives in England, we show how patient experiences are re-articulated by professionals who add their own intentions and accents in a dialogical process which incorporates diverse forms of knowledge and the conflicting demands of healthcare services. In this process, patient experiences become useful epistemic commodities, helping professionals to respond to workplace pressures by abstracting experiences from patients’ biographies, instrumentalising experiences and privileging ‘disembodied’ forms of involvement. Understanding knowledge as relational and hybrid helps move beyond the assumption that there is a clear dichotomy between ‘objective science’ and ‘subjective experience’. This article illuminates how new knowledge is produced when professionals engage with ‘lay’ patient knowledge, and helps inform the sociology of knowledge production more widely. </jats:p

'Slow co-production’ for deeper patient involvement in health care

"Slow co-production", achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and public involvement and engagement

Spatial dimensions of telemedicine and abortion access: a qualitative study of women's experiences.

BACKGROUND: Telemedicine may help women comply with onerous legislative requirements for accessing abortion services. In Utah, there are three mandatory steps: a state-mandated information visit, a 72-h waiting period, and finally the abortion procedure itself. We explored women's experiences of using telemedicine for the first step: the information visit. METHODS: We conducted 20 in-depth interviews with women recruited from Planned Parenthood Association of Utah in 2017 and analyzed them using iterative thematic techniques, using a framework based on Massey's conceptualization of space as comprising temporal, material and social dimensions. RESULTS: Temporal, material and social dimensions of women's access to abortion services intertwined to reduce access and cause discomfort and inconvenience among women in our sample. The 72-h waiting period and travel distance were the key temporal and material barriers, while social dimensions included fear of social judgement, religious influence, and negative stereotyping about people who have abortions. Women described traveling long distances alone and risking excessive pain (e.g. denying pain medication in order to drive immediately after the procedure) to try to overcome these barriers. CONCLUSION: Using telemedicine helped patients reduce burdens created by policies requiring attendance at multiple appointments in a state with limited abortion services. Attending to spatial aspects of abortion provision helps identify how these different dimensions of abortion access interact to reduce access and impose undue burdens. Telemedicine can improve privacy, reduce travel expenses, and reduce other burdens for women seeking abortion care

“People are having lots of other kinds of sex”: Exploring sexual lifeworlds of LGBTQ+ young people in Bangladesh

A lack of recognition of sexual diversity in Bangladesh continues to contribute to a scarcity in in-depth research around lived experiences of sexual and gender diverse young people. In this article, we adapt a phenomenological reflective lifeworld approach to capture the essential aspects of sexual intimacy as described by diverse young people. This article is based on qualitative data collected in Dhaka, Bangladesh over nine months in 2019 as part of the first author’s doctoral research. Using thematic analysis, we draw on experiences of normative sexual expectations from biographical in-depth interviews with 14 self-identifying lesbian, gay, bisexual, transgender, queer, and others (LGBTQ+) individuals aged 18 to 24 years. According to participants, sexual intimacy as experienced by LGBTQ+ young people in Bangladesh meant desiring consensual sexual and romantic relationships with sexually “matched” partner(s) while navigating heteropatriarchal sexuality norms. We observed five interlinked themes which encompassed the sexual lifeworld of young people in our study: desire for romantic intimacy in sexual interactions; need for discretion when navigating sex and relationships; “matching” sexual roles in partnerships; challenges to relational power dynamics of masculinity; and embodying notions of sexual morality. Our findings captured the essence of young people’s sexual lifeworlds in our study and indicate a universality around sexual intimacy while still making space for intersections of diverse lived experiences and social orientations. Further research is required to better understand these nuances in sexual behaviour

'Bending' against straightening devices: queer lived experiences of sexuality and sexual health in Bangladesh.

BACKGROUND: Despite global data around increased health risks among sexual and gender diverse populations, lived experiences of young lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+) people are often ignored in mainstream health research. This is particularly evident in countries such as Bangladesh where the rights of sexual minorities are not recognised. This article looks at queer lived experiences of sexuality and sexual health within such a context. We use the phenomenological framework of heteronormative 'straightening devices' - mechanisms working to direct people towards heterosexuality, gender conformity, and procreative marriage - to identify 'invisible' structures upholding normative sexual behaviours and see how young people in Bangladesh navigate these in their everyday lives. METHODS: This article is based on qualitative data collected in Dhaka, Bangladesh over nine months in 2019 as part of the first author's doctoral research. Using thematic analysis, we draw on experiences of normative sexual expectations from biographical in-depth interviews with 14 purposively sampled LGBTQ + individuals aged 18 to 24. RESULTS: Respondents identified heteronormative expectations around gender norms of traditional behaviour and presentation for men and women as well as parental expectations of compulsory heterosexuality through marriage. These straightening devices existed at multiple levels, including individual, interpersonal, community, and societal. The four main themes around straightening devices include marriage norms for women; harassment of feminine-presenting bodies in public spaces; heteronormative healthcare; and consequences of not embodying heteronormativity. CONCLUSION: Our study highlighted young people's everyday experiences of having to 'bend' to - and against - heteronormative straightening devices at home, in public spaces, and within institutions such as healthcare in Bangladesh. The exploration of queer experiences provides new insights into context-specific ways in which sexual and gender diverse people understand themselves. Further research using the framework of straightening devices can help public health professionals to identify more 'barriers' confronted by sexual and gender diverse young people