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- Convenors:
-
Santiago Ripoll
(University of Sussex)
Caroline Ackley (Brighton and Sussex Medical School University of Sussex)
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- Format:
- Panel
Short Abstract:
This panel explores ethnographically how ethics shapes health-seeking behaviours and how health services may design care pathways that accommodate diverse moral worldviews. Ethical frameworks and lived experience -especially in situations of precarity- shape how people navigate health services.
Long Abstract:
To provide adequate health services, providers need for care pathways to be adapted to the reality of people’s health-seeking practices. In turn, in diverse environments, advice and health-seeking differs between social groups (according to gender, income, race and ethnicity, migration status, etc.).
People do not behave in a predicted linear fashion solely according to their socio-demographic characteristics, but rather experience precarious life and deal with emergent and unexpected challenges of an uncertain environment (Al-Mohammad and Peluso 2012). People practice moral navigation, adapting and reassessing their values, priorities and health decisions as their therapeutic itinerary unfolds (White and Jha 2021).
People’s ethical frameworks – how they behave as ethical agents, morally bound to others (their peers, their families, etc.)- shape how people seek health advice and their decisions when engaging with health providers and public services (Ripoll et al 2022). This panel is seeking ethnographic papers that respond to the following questions:
- How do people’s moral and ethical demands shape their health-seeking practices?
- Do people face moral conundrums when making health decisions and how are these resolved (or not)?
- What role does uncertainty and emergence play in this moral navigation of health services?
- How do health providers consider patients’ moral lives when assessing their navigation of health services?
- Can care pathways be adapted to the different moral worldviews of health service users?
This panel will aim to bring together insights from the field of anthropology of ethics with applied anthropology in the context of health.
Accepted papers:
Paper short abstract:
This paper examines how people’s moral and ethical considerations influence their healthcare decisions, arguing that health-seeking behavior in GMW chiefdoms is shaped by interconnected structural and social factors.
Paper long abstract:
In Sierra Leone, maternal and under-five mortality rates are among the highest in the world. In 2010, the government adopted the Free Healthcare Initiative (FHCI) providing free healthcare for children aged under-five and pregnant and lactating women. However, the FHCI is seriously impeded by the limited availability of health staff, gaps in medication supply, and weak management. In this paper, we present experiences of the Kenema district residents, Sierra Leone and how people’s moral and ethical considerations influence their healthcare decisions. We argue that the health-seeking behaviour (HSB) of the population is influenced by interrelated structural and social factors. This qualitative research was conducted in rural GMW chiefdoms in February 2020, using in-depth individual, paired, and group interviews. Contrary to the assumption that traditional healers influence HSB, data suggest that structural factors like proximity, affordability, previous experience, and reception at the health facility were the main determinants. Healthcare providers felt that people went to a traditional healer first; however, the population emphasised that their first choice was always the peripheral health unit (PHU) provided there were no barriers. These barriers include, living in hard-to-reach areas, transportation, unexpected payment for services, and fear of the health staff. The study reveals the complex reality people face in terms of access to healthcare and multiple factors that influence HSB. One community member noted that if people could not afford a PHU, they would turn to alternative forms of healthcare — ‘Where my pocket can afford is where I will take my child’.
Paper short abstract:
Structured moral navigation reveals how inequity, people's moral frameworks, and the unfolding of life interact in precarious contexts. Analysing health-seeking practices in London and Marseille during COVID-19 using this lens can give insights into designing care-pathways in health services.
Paper long abstract:
To provide adequate services, health providers and civil society organisations need for their care pathways to be adapted to the reality of health-seeking practices. In turn, in urban superdiverse environments, advice and health-seeking differs between social groups (according to gender, income, race and ethnicity, migration status and so on). In circumstances of extreme precarity – cost of living crisis, in-poverty employment, racism and discrimination, etc.- uncertainty and lived experience play a major role (MacGregor et al 2020). People do not behave in a predicted linear fashion solely according to their socio-demographic characteristics, but rather experience precarious life and deal with emergent and unexpected challenges and priorities of an uncertain environment (Al-Mohammad and Peluso 2012). People’s ethical frameworks – how they behave as ethical agents, morally bound to others (their peers, their families, etc.)- shape how people seek health advice and their decisions when engaging with health providers and public services (Ripoll et al 2022). Therefore, health seeking practices are more akin to navigation. I propose the concept of structured moral navigation, expanding the frameworks set out by Vigh (2009) and White and Jha (2021) to show the interaction between structure and the unfolding of life in the context of uncertainty and precarity when racialised and minoritised communities are accessing health services. I draw on our recent research on health-seeking during COVID-19 and health equity post-COVID-19 in London and Marseille, as well as secondary analysis of qualitative data repositories compiled during the pandemic to explore this lens on health-seeking practices.
Paper short abstract:
This presentation explores different diagnostic-seeking pathways of patients and medical professionals dealing with complex and partially understood medical conditions. Looking for a diagnosis or managing the symptoms are strategies shaped by entangled cultural, moral and social factors.
Paper long abstract:
Medical uncertainty can limit the capacity of biomedicine not only to treat but also to diagnose, explain and recognise illness. This impasse adds to the complexity of how individual experiences of illness are socially and culturally shaped. This presentation explores the role of medical uncertainty in shaping how patients navigate health services. It draws from ongoing research in the UK with patients, clinicians and researchers in relation to four uncertain and complex biomedical conditions: fibromyalgia, ME/CFS, long COVID and chemobrain. Patients and professionals have different approaches to managing medical uncertainty, which include both the offering or seeking of a specific diagnosis or managing a set of symptoms without diagnosis. This analysis highlights how medical uncertainty is embedded in complex health-seeking paths, and often results in a diagnosis by exclusion. In this context, important issues emerge. Patients’ moral and practical preferences might be oriented towards biomedical diagnosis or towards management without diagnosis. Anamnesis has a central role, and cultural differences can extend the variation in the interpretation of anamnesis. The resources needed for health-seeking (financial resources, knowledge, social connections, physical and psychological energy) are unequally distributed, and a diagnosis can be beyond the reach of many. The aim is to discuss how obtaining a diagnosis and the lack thereof does not involve only the social suffering of having an illness that is not fully recognised by the biomedical system (and parts of the wider society) but also moral questions about the usefulness and cost of diagnosis and its linked health-seeking practices.
Paper short abstract:
I follow the moral assumptions in diabetes guidelines as they travel to a rural hospital in a Totonac community in Mexico, showing how medical staff and diabetes patients differently negotiate ideas about ethics and individual responsibility.
Paper long abstract:
Anthropologists have shown how diabetes prevention and treatment in public health and clinical settings tend to frame the disease in moral terms, emphasizing individual responsibility over environmental determinants and making moral claims about people’s lives. This presentation examines how notions of individual responsibility in diabetes care shape ideas about ethical decision-making in practice, and how these dynamics vary across contexts. Drawing on archival research and fieldwork conducted in Mexico City and Ixtepec, Puebla, I follow the moral and ethical assumptions embedded in national diabetes guidelines as they travel from the U.S. to a rural hospital in a Totonac community in Mexico.
I explore how medical staff in the rural hospital in Ixtepec reinterpret these assumptions based on their beliefs about the local population as only partially capable of ethical decision-making. I then examine how these local moral framings of diabetes are received and negotiated by local patients. I show how Totonac understandings of diabetes as a matter of personal destiny partially invert the moral claims put forward by medical professionals. These understandings influence local ideas about ethical behaviour in relation to diabetes management, ultimately revealing equivocations between national health care norms, their local enactments, and indigenous knowledge.
Paper short abstract:
How do healthcare professionals navigate the logics of specialization and care in antenatal care? Through ethnographic fieldwork at an outpatient clinic, we explore ethical negotiations as health providers are caught between logics.
Paper long abstract:
This paper examines how healthcare professionals in the Danish antenatal care system navigate the interplay between the logics of specialization and care. These logics present distinct opportunities and challenges in caring for pregnant persons with diabetes, who have been categorized as socially vulnerable. While specialization enhances precision in medical practice, it often fragments care, creating gaps that patients and care providers must navigate. Conversely, normative ideals of "care," emphasizing holistic, patient-centered approaches, may generate ethical dilemmas and tensions within specialized frameworks.
Based on ethnographic fieldwork in an outpatient clinic for pregnant persons with diabetes, we analyze how healthcare professionals act as navigators and negotiators of these logics. We highlight their dual responsibility: delivering specialized care while addressing patients' broader, holistic needs that often fall outside rigid protocols. Our analysis shows how professionals, often isolated within their specializations, reconcile these competing logics through ethical decision-making and relational care, bridging gaps left by specialization. Although designed for precision, the organizational environment often undercuts integrated care, leaving providers with conflicting obligations.
This study highlights how navigating the interplay between specialization and care is essential for addressing systemic gaps, offering insights into improving equitable and integrated care in complex healthcare systems.
Paper short abstract:
Social Prescribing aims to alleviate health inequalities through signposting people into non-clinical activities. Social Prescribers find it challenging to collect Outcome Measurements. This paper investigates dissonance between the ethical orientation of the measurements, staff and service users.
Paper long abstract:
In order to support the broader life contexts which shape health and wellbeing, since 2016, the UK has been developing a ‘Social Prescribing’ program. This consists of a supported referral route from NHS health services, via an NHS paid Social Prescriber, into other state, community or charitable services that can support people in non-clinical ways, for example, with financial advice, housing problems, or social groups and activities. The aim is for these programs to alleviate health inequalities while also making good economic sense for the NHS, through focusing on prevention and on non-clinical forms of support. Yet in order to continue to secure support locally, regionally and nationally, Social Prescribers are tasked with measuring the impact of their interventions, typically, through using ‘before’ and ‘after’ Wellbeing measures. These measurements prove challenging to complete, both for service users and Social Prescribers. Taking up the invitation of this panel to consider the ethical orientations of service users and health systems, this paper discusses why accruing wellbeing outcome measures is so challenging, and how these measurement challenges play out. I will explain how people are ethically orientated in different ways towards need, towards care, towards one another, and – crucially - towards time. I argue that the diverse ‘ordinary’ forms of evaluation that service users and Social Prescribers use are dissonant from the formal measurement system.
Paper short abstract:
This paper examines how people renegotiate their ethical perspectives on health/harm through self-injury. Through their practise, individuals' ethical priorities shift from the pursuit of a ‘healthy’/’unwounded’ body, towards values of agency, autonomy, and wound/body ownership.
Paper long abstract:
Based on ethnographic fieldwork with a grassroots self-injury support organisation in the North of England, this paper examines how people renegotiate their ethical perspectives on health/harm through self-injury and wound management. Using case studies from the field, I consider, how, when and under what circumstances individuals have sought treatment for their injuries; and the ethical quandaries they have faced when doing so.
Using perspectives from feminist new-materialism and ANT, this paper will discuss how practises such as cutting, burning, scratching and hair-pulling make up aspects of individuals’ perceptions of their own mental healthcare, rather than being opposed to it. I will show how, through the practise of self-injury and wound-management, individuals blur boundaries between healthful/harmful behaviours. In so doing, their ethical priorities shift from the pursuit of a ‘healthy’/’unwounded’ body, towards values of agency, autonomy, and wound/body ownership.
Insights from new-materialism and ANT prompt a discussion of the agency and role of the wound in self-injury. I argue that an understanding of what the wound does, is central to understanding the decision-making process that individuals who practise self-injury go through when deliberating how and when to seek treatment.
Finally, I will discus what implications of these perspectives might be for treatment protocols and research ethics alike.