‘Self-care without a self’: Alzheimer’s disease and the concept of personal responsibility for health

The article focuses on the impact of the concept of self-care on persons who are understood as incapable of self-care due to their physical and/or mental 'incapacity'. The article challenges the idea of this health care concept as empowerment and highlights the difficulties for persons who do not fit into this concept. To exemplify this, the self-care concept is discussed with regard to persons with Alzheimer's disease (AD). In the case of persons with AD, self-care is interpreted in many different ways-depending on the point of view, for instance as an affected person or a carer. To prevent a marginalisation of the growing group of elderly persons with dementia, the article argues that concepts such as those of personhood, wellbeing, autonomy, rationality and normality have to be re-thought with regard to an increasingly ageing population. Taking into account that AD as a socio-medical construct has to be understood in the context of power relations, the article focuses on the mutual influence between the concepts of self-care and of AD and its possible impact on governing dementia and AD in particular. Michel Foucault's considerations on 'technologies of the self' provide the basis for the discussion of the self-care concept within existing societal power relations.     

‘It’s one of those “It’ll never happen to me” things’: young women’s constructions of smoking and risk

In this article, we examine how young women make sense of the risks associated with smoking cigarettes. We recruited young women smokers and ex-smokers living in Australia in 2014 and 2015 to participate in semi-structured interviews and a participant-produced photography activity on young women’s experiences of smoking and smoking-related risk. We analysed the data using discourse analysis to examine how young women positioned themselves in relation to smoking-related risk, and how this was shaped by discourses of health, risk and femininity. We identified four dominant interpretative repertoires: ‘the risks of smoking are self-evident’, ‘it’s not going to happen to me’, ‘smoking as a lesser evil’ and ‘smoking to cope with stress and emotion’. Through our analysis, we found that by drawing on these repertoires, participants were able to position the risks of smoking as both acceptable and unacceptable. Participants also made use of several of these repertoires to position anti-smoking messages as ineffective. We place these findings in the context of broader health and risk discourses surrounding young women’s use of smoking to reinforce and subvert representations of ‘respectable’ femininity. We identify ways in which public health approaches could and should be developed to recognise the complexity and contradiction inherent in young women’s lay accounts of smoking-related risk and situate smoking risks in the context of young women’s everyday lives.     

‘It’s the sense of responsibility that keeps you going’: stories and experiences of participation from rural community health workers in Guatemala

Background

In 1978, the Alma-Ata declaration on primary health care (PHC) recognized that the world’s health issues required more than just hospital-based and physician-centered policies. The declaration called for a paradigm change that would allow governments to provide essential care to their population in a universally acceptable manner. The figure of the community health worker (CHW) remains a central feature of participation within the PHC approach, and being a CHW is still considered to be an important way of participation within the health system.

Methods

This study explores how the values and personal motivation of community health workers influences their experience with this primary health care strategy in in the municipality of Palencia, Guatemala. To do this, we used an ethnographic approach and collected data in January-March of 2009 and 2010 by using participant observation and in-depth interviews.

Results

We found that the CHWs in the municipality had a close working relationship with the mobile health team and with the community, and that their positions allowed them to develop leadership and teamwork skills that may prove useful in other community participation processes. The CHWs are motivated in their work and volunteerism is a key value in Palencia, but there is a lack of infrastructure and growth opportunities.

Conclusion

Attention should be paid to keeping the high levels of commitment and integration within the health team as well as keeping up supervision and economic funds for the program.     

“It’s on everyone’s plate”: a qualitative study into physicians’ perceptions of responsibility for smoking cessation

Background

Little research has investigated in-depth how physicians perceive their role in smoking cessation care. This qualitative study sought to understand physicians’ perceptions of responsibility for smoking cessation.

Methods

Data were collected through individual semi-structured interviews and focus group interviews between June and November 2017 in The Netherlands. We interviewed 5 addiction specialists, 5 anesthesiologist, 4 cardiologists, 8 GPs, 5 internists, 5 neurologists, 2 pediatricians, 6 pulmonologists, 7 surgeons, and 8 youth healthcare physicians (N?=?55). Data analysis followed the framework approach.

Results

The analysis showed that three actors were perceived as responsible for smoking cessation: physicians, patients, and the government. Participants perceived physicians as responsible for facilitating smoking cessation -albeit to different extents-, patients as carrying the ultimate responsibility for quitting smoking, and the government as responsible for creating a society in which smoking uptake is more difficult and quitting smoking easier. Perceptions of smoking itself were found to be important for how participants viewed responsibility for smoking cessation. It remained unclear for many participants which healthcare provider is responsible for smoking cessation care.

Conclusions

The organization of smoking cessation care within health systems should be a focus of intervention, to better define physician roles and perceptions of responsibility. In addition, it seems important to target perceptions of smoking itself on the level of physicians and –as suggested by comments by several participants- the government.

     

Is it time for the sociology of health to abandon ‘risk’?

‘Risk’ has been a fruitful seam for sociological enquiry about health and illness, generating theoretical understanding of the links between cultural analysis of modernity and the ways in which individuals makes sense of, and act in the face of, threats to their health. However, as both a topic area of research and a way of framing our understanding of how people deal with uncertainty and misfortune, it has become what could be called a ‘second order’ object of enquiry: we are no longer interested in risk per se (how it is managed, perceived, utilised) but in which domains it may be salient, or what the implications are of particular discursive evocations of ‘risk’. Drawing on empirical work in the areas of food safety and road safety, this paper identifies some limitations of locating research within the field of risk. It may be time for the sociology of health and illness to abandon an over-reliance on theoretical accounts of risk for framing empirical studies.     

‘Sex’ – it’s not only women’s work: a case for refocusing on the functional role that sex plays in work for both women and men

Mention of the term sex work often invokes images of marginalized women at risk for HIV infection. Such images, however, are counterintuitive to the functional role intended by the movement that spawned use of the terms ‘sex work’ and ‘sex worker.’ This article looks at the sexual practices of men in urban China to argue for a return to a functional definition of ‘sex work’, which was originally meant to legitimize the role sex plays in work. The progenitors of this movement intended to use ‘sex work’ as a means to legitimize sex as an income-generating activity for women involved in prostitution. I show that sex can also serve a functional role in the work-related duties of men seeking economic and political success in contemporary urban China. Men in China utilize sex as one way for demonstrating the loyalty necessary to access state-owned and controlled resources in a market economy governed under a Leninist system. Overall, the article demonstrates that reclaiming perception of sex work as a functional rather than behavioral category can expand its use for preventing HIV among the broad subset of people who engage in sex as part of their work.     

Changing emotional engagement with running through communal self-tracking: the implications of ‘teleoaffective shaping’ for public health

Emerging research explores the role of self-tracking in supporting healthy behaviour. Self-tracking comprises a number of interrelated practices; some individual some communal. In this article, we focus on practices that enable interaction between self-trackers through data sharing and communication around personal data. For public health, communal self-tracking has been explored for the additional benefits it provides in addition to self-knowledge. However, under-explored is the emotional entanglement of self-tracking and tracked activities, or the role of practitioners in the dynamic evolution of tracked practices. Qualitative, mixed methods data were collected from leisure-time runners in the SW England who self-track using social fitness app ‘Strava’, and were interpreted through the lens of practice theory. We find that communal self-tracking affords the active shaping of the emotion and purpose of running. This ‘teleoaffective shaping’ allows practitioners to negotiate and reconstitute appealing meanings associated with running to protect their practice loyalty. We identify three mechanisms for teleoaffective shaping afforded by Strava: labelling, reward and materialising effort. Findings advance our understanding of how social fitness apps work to retain practitioners of physically active leisure practices. Future research should further explore the multiple ways that associations with tracked physical activity evolve through entanglement with self-tracking practices.     

‘It’s just a penis’: the politics of publishing photos in research about sexuality

This paper explores some of the challenges of publishing photographs generated as part of sexuality research. It aims to initiate discussion of these issues to enable sexuality researchers to consider and navigate the use of images in their work. Examples highlighting these difficulties are employed from a photo-method project which examined young people, sexuality and schooling. It is argued that existing child-sex-panics rendered these images risky and intensified their scrutiny by gatekeeping forces. The discussion contributes to a broader conversation within the field of sexualities about the constitution of sexuality research as dirty work. Specifically, the paper investigates how some publishing and editing practices might be conceptualised as constituting techniques that construct sexuality research as dirty work. By not publishing photos which form part of sexuality research, the knowledge it is possible for sexuality researchers to generate and circulate is subsequently curtailed.     

‘It helps me make sense of the world’: the role of an art intervention for promoting health and wellbeing in primary care—perspectives of patients, health professionals and artists

Background

Art interventions are increasingly used in public health for the enhancement of patients’ health and wellbeing. The present study investigated perceived outcomes and role of an art intervention from the collective perspectives of participants (patients who took part), deliverers (artists) and referrers (general practitioners and practice nurses).

Methods

A qualitative methodology, using interviews and focus groups, allowed investigation of participants (n?=?18) perceived outcomes and role of the intervention. Participants included patients (n?=?10), artists (n?=?5), and referring health professionals (n?=?3).

Results

Themes that emerged from the analysis included perceived benefits, role and value of the intervention, and setting and referral process. Central to these themes were psychological and mental health benefits, an appreciated holistic treatment option and the merits of the intervention being situated in the surgery setting.

Conclusions

The study showed that art interventions within primary care are valuable in the promotion of public health, and in particular, patients’ mental health. Interactions between other participants and the artist were central to achieving patients’ perceived health improvement. Locating the intervention in primary care facilitated patient participation and provided health professionals with a holistic treatment alternative. There is also some evidence that participation in the intervention encourages less dependence on the health professional.     

‘I’m not insane,my mother had me tested’: the risk and benefits of being labelled ‘at-risk’ for psychosis

In this article we examine the identification of young people deemed to be at an elevated risk of developing psychosis (often referred to as an At-Risk Mental State for psychosis). Although this is not a new concept within psychiatry, there has been a growing interest in this topic because of the proposed inclusion of an official ‘Psychosis Risk Syndrome’ in the 2013 Diagnostic and Statistical Manual. Although we discuss the risks and benefits associated with the categorisation of individuals based on the concept of risk itself, we also draw upon observations from one of our own research studies. We interviewed six adolescents with an identified At-Risk Mental State analysing the data using an Interpretative Phenomenological Analysis framework. We identified three key themes: ‘It is better to say it’, ‘How others would take me’ and ‘Just to have somebody to talk to’. Within these themes, participants endorsed risk identification as a means of personally justifying and explaining their current symptoms, as well as providing a sense of optimism that their condition was not yet fully formed. Concerns regarding stigmatisation were identified although rarely experienced. These findings indicate that there are indeed personal benefits for screening for psychosis risk in young people, despite the ‘undesirability’ of identification reported in other areas of health. The benefits observed may reflect genuine differences in adolescent mental health or the methodological constraints of this exploratory study. Nevertheless, the results contribute to the understanding and ongoing debate of screening for illness in potential ‘at-risk’ populations.     

‘The full has never been told’: building a theory of sexual health for heterosexual Black men of Caribbean descent

Research on Black sexual health often fails to represent the heterogeneity of Black ethnic groups. For people of Caribbean descent in the USA, ethnicity is a salient cultural factor that influences definitions and experiences of sexual health. Most research on people of Caribbean descent focuses on the relatively high rate of STIs, but sexual health is defined more broadly than STI prevalence. Psychological and emotional indicators and the voice of participants are important to consider when exploring the sexual health of a minority culture. The purpose of this study was to qualitatively explore how heterosexual Black men of Caribbean descent define and understand sexual health for themselves. Eleven men who self-identified as Black, Caribbean and heterosexual participated in three focus groups and were asked to define sexual health, critique behaviours expertly identified as healthy and address what encourages and discourages sexual health in their lives. Findings point to six dimensions of sexual health for heterosexual Black men of Caribbean descent. These include: heterosexually privileged, protective, contextual, interpersonal, cultural and pleasurable dimensions. There were some notable departures from current expert definitions of sexual health. Recommendations for further theory development are provided.     

‘It’s teaching … but not as we know it’: using participatory learning theories to resolve the dilemma of teaching in play-based practice

Against a backdrop of ‘play’ as the established notion of best practice in early childhood education, this paper sets out to trouble the discourse by exposing for critique the place of teaching within a play-based curriculum. The paper reports on lessons gleaned from a longitudinal play-based intervention in over 100 primary schools in Northern Ireland. Participatory learning theories (PLTs) [Hedges, H., & Cullen, J. (2012). Participatory learning theories: a framework for early childhood pedagogy. Early Child Development and Care, 182(7), 921–940] are used as the theoretical lens through which the views and practices of teachers have been mapped. The findings highlight how participatory models of learning can illuminate differences between early years practitioners, with many teachers tending to adopt either an overly passive or directed stance in the play experience. In light of the collated evidence, the authors propose an innovative pedagogical framework of what teaching might look like in play-based practice.     

“Any idea how fast ‘It’s just a mask!’ can turn into ‘It’s just a vaccine!’”: From mask mandates to vaccine mandates during the COVID-19 pandemic

Protests starting in the summer of 2020, notedly in the US and UK, have brought together two constituencies: pre-existing anti-vaccine groups and newly formed oppositional COVID-19 groups. The oppositional COVID-19 groups vary in composition and nature, but the central focus is a disagreement about the seriousness and threat of COVID-19 and with the public health measures to control COVID-19. What unites many disparate interests is an aversion to mandates. The compulsion to undertake particular public health activities such as mask-wearing and vaccination is a complex topic of public attitudes and beliefs alongside public health goals and messaging. We aim to analyse social media discussions about facemask wearing and the adoption of potential vaccines for COVID-19.Using media monitoring software Meltwater^TM, we analyse English-language tweets for one year from 1st June 2020 until 1st June 2021. We pay particular attention to connections in conversations between key topics of concern regarding masks and vaccines across social media networks. We track where ideas and activist behaviours towards both health interventions have originated, have similarities, and how they have changed over time.Our aim is to provide an overview of the key trends and themes of discussion concerning attitudes to and adoption of health measures in the control of COVID-19 and how publics react when confronted with mandatory policies. We draw on an already extensive literature about mandatory vaccination policies to inform our assessment, from psychology and behavioural science to ethics, political theory, sociology, and public policy.     

‘Like holding the axe on who should live or not’: adolescents’ and adults’ perceptions of valuing children’s health states using a standardised valuation protocol for the EQ-5D-Y-3L

Quality of Life Research - There is an increasing interest for using qualitative methods to investigate peoples’ cognitive process when asked to value health states. A standardised valuation...     

The price of a woman: Re-examining the use of financial incentives for women’s health in India

ABSTRACT

The use of financial incentives is a common instrument to advance women’s health across low and middle-income countries. Since the 1990s, the conditional cash transfer (CCT) for health has been generally lauded by researchers, policy makers and international financial institutions due to demonstrated improvements in access to health services and a range of health outcomes. Some scholars, however, have cautioned that CCTs should be further scrutinised to assess potential unintended consequences and moral concerns in a variety of contexts. In this article, I re-examine Janani Suraksha Yojana (JSY), a cash incentive programme that aims to promote institutional deliveries in order to reduce high levels of home deliveries and maternal deaths in India. I adopt a critical perspective, focusing on the specific instrument of dowry through the lens of capitalist patriarchy (Mies, M. (1986). Patriarchy and accumulation on a world scale. London: Zed Books). Global and national health policy experts and policy makers require a greater awareness of the dowry system, since this system may hamper the use of financial incentives by reinforcing the commodification of women.     

News media’s framing of health policy and its implications for government communication: A text mining analysis of news coverage on a policy to expand health insurance coverage in South Korea

On August 9, 2017, South Korea announced a new measure to expand National Health Insurance (NHI) coverage, which was nicknamed “Mooncare.” At the early stage of its implementation, the interpretation of a policy by social actors influences its success and the formation of social conflicts around it. This study sought to identify the strategies for interpreting Mooncare in newspapers and government documents and examine the conflicts between them. Therefore, this study used text mining methods that are well-suited to processing large amounts of natural language data. Findings revealed that, while the conservative newspaper The Chosun Ilbo tended to highlight the financial feasibility of Mooncare, the liberal newspaper The Hankyoreh emphasized the change in rationality of government from the previous administration implied by Mooncare. Additionally, medical newspapers tended to adopt the perspective of healthcare providers and to focus on the changes in the medical system that may threaten them. In contrast, general newspapers tended to adopt the perspective of Mooncare’s beneficiaries. Finally, government documents were found to focus on simply introducing the benefits of Mooncare, not responding to the framings of various media. This study identified how various social actors interpreted Mooncare. The results suggest that the government should assume a more active role in the meaning making of the policy.     

Operationalizing the ‘population health’ approach to permit consideration and minimization of unintended harms of public health interventions: a malaria control example

To achieve elimination of malaria, both ‘populations at risk’ strategies and ‘population health’ approaches to intervention are required. While the ‘populations at risk’ vs. ‘population health’ debate is not new to public health, here we advance the discussion by identifying how the ‘population health approach’, coupled with concepts from theories of unintended harms, could be used to identify and guide efforts to minimize unintended harm associated with ‘populations at risk’ strategies, using malaria as an example. We begin by reviewing unintended harm and present the presumptive diagnosis and treatment of malaria clinical practice guideline (PDTM-CPG) as an example of a ‘populations at risk’ strategy for malaria control. We then consider the value of the ‘population health’ approach for identifying and minimizing cultural and economic unintended harms associated with the PDTM-CPG. We outline several concepts that are helpful in terms of the identification and mitigation of unintended harm. Specifically, the ‘population health approach’ emphasizes structural determinants of health that are key to enhancing intervention impact and reducing inequities, while theories of unintended harms emphasize factors that play into the selection and impact of interventions; namely, the breadth and depth of the knowledge base, contextual considerations, basic values, and the perceived need for immediate action. Finally, based on these key concepts, we identify practical discussion questions for district, national, and international public health planners and policy-makers to reflect upon when engaging in intervention design or adaptation. These questions are intended to maximize efforts to achieve malaria elimination while minimizing unintended harms.     

‘It is still coming from the centre and coming out’: The material conditions adding to over-bureaucratised patient and public involvement for commissioning health and care in England

Objective

To understand how materiality affects patient and public involvement (PPI) for commissioning and leading health and care services in the English National Health Service (NHS) context.

Context

From April 2013 groups of general practitioners (GPs) became members of NHS clinical commissioning groups (CCGs) to assess needs and procure core health services for and with local communities. Since July 2022, integrated care systems (ICSs) have subsumed this responsibility. NHS reorganisations have been driven by the promise of more effective and efficient health care and have led to a long history of PPI on economic, political, and moral grounds. Few studies researching PPI in clinical commissioning exist and fewer still have explored a more agentic understanding of materiality and its impact on PPI.

Study Design

A focused ethnography was used to examine PPI for clinical commissioning within two CCG case study sites in England. Three CCG Governing Body lay representatives, nine GP commissioners and seven service user representatives took part in focus groups and/or were interviewed. Fifteen nonparticipant observations were also carried out at CCG meetings and the associated materiality was examined.

Findings

The materiality of activities involved in clinical commissioning influences and shapes the nature of PPI. These forms of materiality may dilute and subvert meaningful engagement and involvement that relies on trust, leadership, learning, and partnership working.

Conclusion

System leaders in ICSs should consider the significance of materiality in centrally driven processes involved in PPI commissioning to reduce barriers and ensure meaningful partnerships within local communities.

Patient and Public Contribution

The study design ensured PPI throughout the research process in keeping with contemporary research practice guidance. The project steering committee included service users with current or recent PPI clinical commissioning experience outside of the study sites. There was PPI involvement in the original study proposal and its development including the bid for doctoral funds on which this study is based. All were involved in assessing the rigour of the data collection, interpretation of the findings and ensuring the project remained true to the aims of the study. Two members have also participated in presentation of the study findings.     

Getting men in the room: perceptions of effective strategies to initiate men’s involvement in gender-based violence prevention in a global sample

Abstract

As engaging men in gender-based violence prevention efforts becomes an increasingly institutionalised component of gender equity work globally, clarity is needed about the strategies that best initiate male-identified individuals’ involvement in these efforts. The purpose of this study was to examine the perceived relevance and effectiveness of men’s engagement strategies from the perspective of men around the world who have organised or attended gender-based violence prevention events. Participants responded to an online survey (available in English, French and Spanish) and rated the effectiveness of 15 discrete engagement strategies derived from earlier qualitative work. Participants also provided suggestions regarding strategies in open-ended comments. Listed strategies cut across the social ecological spectrum and represented both venues in which to reach men, and the content of violence prevention messaging. Results suggest that all strategies, on average, were perceived as effective across regions of the world, with strategies that tailor messaging to topics of particular concern to men (such as fatherhood and healthy relationships) rated most highly. Open-ended comments also surfaced tensions, particularly related to the role of a gender analysis in initial men’s engagement efforts. Findings suggest the promise of cross-regional adaptation and information sharing regarding successful approaches to initiating men’s anti-violence involvement.