1.6 Experiencing treatment

Sarah Riley; Siobhán Healy-Cullen; Gareth Terry; Don Baken; Aorangi Kora

1.6 Experiencing treatment

Sarah Riley; Siobhán Healy-Cullen; Gareth Terry; Don Baken; and Aorangi Kora

Overview

In this chapter, we ask: How do people experience treatment? To address this question, we discuss the different elements that can shape a person’s experience of treatment, showing how it is produced through multiple and interconnected personal, social, cultural and physical elements. Returning to more-than-human theory introduced in Riley et al. Chapter 1.3, we consider “assemblage” as a conceptual framework for understanding the interplay between these psycho-socio-material elements, and as a tool for evaluating treatment in terms of increasing capacities for action. Through this discussion, we aim to achieve the following learning objectives:

Learning objectives

Analyse the experience of treatment as a complex, socially influenced phenomenon embedded in power relations.
Examine how the concept of assemblage provides a useful lens for understanding the experience of treatment.

What shapes our experience of treatment?

In healthcare, “treatment” generally refers to the interventions and actions taken by healthcare providers in professional and other settings, to address a patient’s health condition or related issue (e.g., pregnancy). Treatment usually aims to cure, alleviate, reduce or prevent symptoms, or enhance the outcomes of natural processes, such as childbirth or menopause.

Even for a relatively mild issue, treatment occurs within multiple, interconnected elements that make it a complex and dynamic experience. In this section, we consider some of the personal, social, material, discursive, and organisational elements shaping the experience of treatment. We separate them out for clarity, while recognising that they are connected and affect each other. As noted in the introduction to this book, critical health psychologists often look for a theoretically strong conceptual framework to make sense of their topic. This is because theories provide us with a framework for organising, interpreting, and explaining the information we have about an issue, which can be especially helpful when there are multiple elements involved – such as in the experience of treatment. In Riley et al. Chapter 1.5, we discussed the way that stories function to contain a range of complex information in an accessible and meaningful format. In this chapter, we draw on the concept of assemblage.

An “assemblage” is a dynamic, open-ended system, within which multiple components intra-act with each other. These components are not limited to a particular kind and include both discursive and material. To help make sense of assemblage theory, imagine a map of a transport system, such as the London Underground [PDF]. It is made of multiple stations, connected by train lines, over which trains run, and carry passengers, who themselves are connected to other assemblages, such as the streets that connect to the train system, meaning that the train system is not closed and connects to other systems. The train system is also constantly in flux, allowing flows of machines, people, air, and so forth. And although they look like fixed objects at first glance, we could also argue that the train system’s components, such as machines and people, are not fully formed before they intra-act with each other, but are “co-constituted” through their intra-action. For example, at different moments in the day, the same carriage will have different people, levels of cleanliness, or might have its doors open or closed. The carriage therefore does not have a ‘pure’ existence outside of these other elements shaping its existence, moment to moment. The number of stations and the number of lines between these stations also impact on the train assemblage, because the more connections there are, the greater variety of journeys can be made – increasing the capacities of travellers. For example, they might be able to change at a station with disabled access. In assemblage theory, the lift/elevator has agency (when defined as being able to affect another) in shaping that journey. From this, we might say that a “healthy” London Underground is one where all the lines are open and running on time, and where multiple existing and new connections can be made. Sometimes though, there may be an abrupt (potentially temporary) change, such as when there is a fire at a station that closes a whole section of the network. Sometimes this might be more permanent, as Sarah found once, when a new line had been built while she had been away, which changed a once familiar, but difficult journey, into a new, easy travel experience.

Key takeaways for understanding assemblage theory

The concept of assemblage was advanced by Deleuze and Guattari (1987) and has since been substantially developed. Here we highlight the key elements of the concept as outlined in our transport system analogy above:

a number of different kinds of components interact, shaping each other in the process, so that moment to moment these elements are reconfigured through such “intra-actions”
both the human and nonhuman have agency in this process
they are part of an open-ended configuration that is constantly in flux
this unfolding can take abrupt and unexpected directions
because these components are in constant flux, and shape each other, analytic attention is directed towards the forces or ‘affective relations’, between them
components should not be thought of as fixed, but are themselves parts of other assemblages
in general, the more connections that can be made, the healthier the assemblage, because it increases capacities for action.

Below we discuss a range of interconnected elements in the “treatment assemblage”, and why they matter when trying to understand how people experience treatment.

The personal (“psycho”) elements. These include personal interpretations, life histories, individual differences, and emotional responses.
The socio-cultural elements. These include social positions, cultural perspectives, social and organisational discourses.
The material elements. These include elements of the physical body, disease physiology, technologies used in treatment, and the space and place where treatments happen.

Although we separate these elements out for clarity, keep in mind that they are part of an assemblage, thus shaping and co-constituting each other.

Activity

Keep a notepad by your side and draw out the relationships between the elements of the “experience of treatment” assemblage we outline below. You could do this by creating “nodes” for each of the elements and then drawing lines between them where you see connections. Write across those lines a brief description of how they might shape and co-constitute each other. You could share your assemblage maps with others, such as in a classroom setting or learning group. If you like, you can also post your map on our Health Psychology LinkedIn page to spark discussion with a wider community of learners and practitioners. (Note: You’ll need to request to join the group first.)

Personal elements

There are significant individual differences in how people experience treatment. These differences are shaped by multiple elements, including personal interpretations, individual differences in how treatments are physically and psychologically experienced, and life histories – including past experiences and personal or family stories that inform how a person approaches and experiences a treatment. Such elements shape some of the unique thoughts and feelings that people experience when undergoing treatment. For example, people vary in their coping strategies for chemotherapy (Mendonça et al., 2021), and in their pain tolerance during procedures, such as needle insertions for dialysis (Xie et al., 2022). There is also wide variance in how people make sense of treatment experiences. For example, some people see hospitals as places of care and healing, while others associate them with distress (Radley & Taylor, 2003).

Treatments are also experienced in relation to time. For example, having an illness with a short treatment duration and a good prognosis may lead to a more positive treatment experience, as individuals can anticipate its end and envision a future in which they are healthy again. In such cases, time proceeds linearly, with the past leading to the present and a hopeful future. However, as discussed in Riley et al. Chapter 1.5, people can have more complex experiences of time. Screening, for instance, is often framed as obtaining objective knowledge that can improve future health by detecting diseases early; actions in the present are thus keeping an unwanted future at bay. Yet, participating in screening brings the possibility of illness into the present imaginary, often provoking anxiety rather than comfort. Additionally, waiting for results can create a liminal state in which individuals exist in uncertainty—neither fully healthy nor diagnosed with a disease—leading to an ambiguous sense of the future (Mol, 2002; Stronge, 2013; also see our discussion of Willig, 2009 in Riley et al. Chapter 1.3). In these examples we can see how an individual’s experience of treatment “intra-acts” with temporality, as well as the kind of illness a person has, and if the treatment is preventative or curative.

Socio-cultural influences on treatment experiences

Along with personal components of a person’s treatment assemblage, are socio-cultural elements, which shape how people understand themselves and how they are perceived by others. In the context of treatment experiences, these elements include:

social positions
cultural perspectives
wider social discourses

Social positions

Social positions (sometimes called “positionality”) refer to the ways intersecting social categories—such as gender, sexuality, ethnicity, race, class, dis/ability, and body size—shape how individuals perceive themselves and how they are understood by others. Social positions are not fixed individual traits, but socially constructed in an on-going way within specific contexts. For example, a doctors’ surgery that is easily accessible might mean a person’s disabled status is less salient, or that they experience themselves as ‘fitting’ in with the world or are viewed as such by others. In contrast, if they require help to use the facilities—if a ramp needs to be brought out for a wheelchair user for example—their social position as a disabled person is produced quite differently.^[1]

Beyond traditional sociological categories like class, social positionalities also encompass widely held social constructs that shape identity. Motherhood, for example, carries social expectations that mothers are responsible for their children’s health, which can lead to heightened scrutiny of their parenting (Riley et al., 2019). As a result, seeking treatment for a child can be an emotionally charged experience, not only due to concern for the child’s well-being but also because of the desire to be perceived as a “good mother”. Yeabsley (2024), for example, found that mothers reported positive experiences of treatment when the doctor attended to the guilt they experienced in their struggles to feed their children a healthy diet.

Social positions shape people’s access to healthcare in subtle but profound ways, with the potential to affect the type of treatment they receive, how it is delivered, and how they engage with or resist medical recommendations. As Fox and Powell (2023, p. 231) describe, interacting social positionalities create “a thousand tiny advantages and disadvantages [that] enable or constrain a body’s capacity for well-being”. For instance, in Sarah and Siobhán’s reproductive health study (discussed in Chapter 1.5), one participant shared that she had avoided seeing a doctor for seven years because she expected her concerns to be dismissed due to her body size and ethnicity, saying:

I don’t really like going to the doctor’s. So umm because I’m brown, so everything’s about being fat or [laugh] any of the you know, like all of that stuff. So I just don’t really go to the doctor.

Her experience reflects how healthcare professionals are part of wider society and, as such, can hold implicit biases that affect the treatment experience of their patients. Studies have documented, for example, how weight stigma affects medical care, including doctors failing to refer fat^[2] patients for diagnostic testing or limiting treatment recommendations to weight loss alone (see Chrisler & Barney, 2017; Phelan et al., 2015; Tomiyama et al., 2018 for how sizeism can negatively impact on fat people’s experience of treatment, including intersectional differences related to racial and gendered positionalities).

The stigma surrounding body size can also contribute to healthcare avoidance. Many fat people delay seeking medical care due to fear of judgment, making them more vulnerable to chronic stress and poorer health outcomes (Lupton, 2018; Phelan et al., 2015; Tomiyama et al., 2018). As Lewis (2015, p. 1) wrote in a patient experience response in the British Medical Journal:

When I worry that I might be unwell, I often try to avoid visiting a general practitioner. Almost every consultation I’ve ever had—about glandular fever, contraception, a sprained ankle—has included a conversation about my weight; and that’s inevitably the conversation that destroys any rapport or trust that might have existed between me and my doctor.

These examples highlight how social positions—especially in the context of stigmatised identities—can profoundly shape healthcare experiences, influencing whether people seek treatment, how they are treated, and how they engage with medical advice.

Example: LGBTQIA+ experiences of cancer treatment

How LGBTQIA+ community members experience healthcare systems offers an example of how social positionalities are produced within specific contexts. For example, many members of this community report carefully managing their relationships with their doctors, including controlling disclosure of their sexuality or gender identity (Adams et al., 2008; Withey-Rila et al., 2024).

In relation to experiences of cancer care, healthcare systems are often structured around cis-heteronormative assumptions that shape the experiences of LGBTQIA + people in accessing and navigating care. For LGBTQIA + people diagnosed with cancer, these structural biases are experienced in various ways, such as inadequate representation in health promotion materials, repeatedly having to disclose their identities to healthcare providers who are working on a cis-heterosexual norm, or having their diagnostic or treatment needs ignored.

Such erasure creates significant barriers to optimal cancer care, producing disparities in early detection, diagnoses, treatment, reoccurrence, and survivorship outcomes (Eckhert et al., 2022). For example, lesbian and bisexual women may delay seeking medical care more frequently than heterosexual women due to previous negative experiences with providers and cis-heteronormative assumptions. This provides an explanation for why, in Aotearoa New Zealand, there are lower cervical screening rates among sexual minorities, leaving them at greater risk of undiagnosed cervical cancer (Ellis, 2023, 2025).

The video below, from the Fred Hutchinson Cancer Center in the USA, offers an example of how cis-heteronormativity shapes diagnosis. In it, Molly, who identifies as bisexual and nonbinary, recounts how their doctor did not believe it was worth testing for HPV throat cancer because it mostly affects men, without considering that this is because a risk factor for this cancer is sex with women. Molly attributes their delay in diagnosis—stage 4a throat cancer—to bias.

A title screenshot from the YouTube video called LGBTQ & cancer: Molly Wilvich.

Watch: LGBTQ & cancer: Molly Wilvich

Cis-heteronormativity also stops LGBTQIA+ people from getting the kind of care they need after diagnosis. As one of Ussher et al.’s (2023, p. 8) Australian participants explained:

I feel alienated when discussions around fertility and sexual health post cancer are so cis-heteronormative. I don’t feel comfortable “outing” myself to my doctors in these contexts when it’s assumed that fertility is related to heterosexual penetrative sex. I’m too scared to ask whether I’m able to preserve my fertility (eg freezing eggs? I don’t even know what the options are because it’s never been spoken about) so that a same-sex partner could carry a pregnancy, or any other alternative for queer pregnancies (cis woman, bisexual, lymphoma, age 26).

Relatedly, in the video below, Winter Downs, who identifies as nonbinary, expresses frustration with the gendered assumptions that shaped their cancer care, including how the clinic had “women” in the name, creating “a foundational expectation that everyone coming through the door was a woman and wanted to be read that way”.

Winter also describes how the treatments on offer reproduced normative assumptions of heterosexual middle-class femininity, such as assuming everyone would desire a full breast reconstruction and have a private car and office that would allow normal daily life to continue during chemotherapy. In contrast, Winter did not want new breasts and took a bus to work in an open plan office.

A title screenshot from the YouTube video called LGBTQ & cancer: Winter Downs.

Watch: LGBTQ & cancer: Winter Downs

Many LGBTQIA+ cancer patients are hesitant to disclose their sexual and gender identities to healthcare providers due to fears of discrimination and hostility. Young people may also lack confidence in disclosing their identity, or correcting healthcare practitioners when misidentified. As a result, they may receive inadequate care and experience feelings of inauthenticity (Ussher et al., 2023).

Transgender people face additional barriers, including the misgendering of their bodies in medical discussions, challenges in accessing gender-affirming care during cancer treatment, and systemic gaps in knowledge regarding the effects of hormone therapy on cancer risk and management (Ussher et al., 2023).

Cis-heteronormative assumptions in healthcare also mean that LGBTQIA+ patients’ partners are often overlooked. Partners may have to repeatedly explain their sexual orientation or gender identity to different healthcare providers to be acknowledged, even in high-stakes situations such as ICU visits, oncology consultations, or surgical planning (Power et al., 2022).

The concept of minority stress—which refers to the chronic stress experienced by marginalised groups due to stigma and discrimination—is useful for understanding these challenges within LGBTQIA+ cancer care (Power et al., 2022). The compounded stress of navigating both cancer and systemic biases results in distress levels that are three to six times higher than those reported by non- LGBTQIA+ individuals in comparable studies (Ussher et al., 2022).

Although progress has been made in addressing healthcare disparities, significant systemic barriers remain. Critical researchers warn of taking an individualist approach to addressing these barriers. Riggs and Treharne (2017), for example, argue that minority stress is the effect of ideology, which renders different people more, or less, intelligible to others. Further, that this occurs across multiple axes of marginalisation and privilege that can intensify, or provide protection from, ensuing stress and associated harm to health and wellbeing. The importance of emphasising the social, they argue, is that interventions then become directed towards social and organisational norms and are less likely to implicitly blame the victim (e.g., for a lack of resilience in the face of these challenges), or mask broader social patterns producing the stress (e.g., when locating the problem of bias in individual attitudes).

By actively working to understand and meet the needs of sexual and gender-diverse people, healthcare providers and institutions can contribute to more equitable and affirming cancer care (Jones et al., 2024). This work involves addressing the social norms that produce systemic barriers to healthcare equity.

Cultural perspectives

People’s cultural perspectives also shape their experience of treatment. Western healthcare systems typically operate within White (often middle class) cultural norms. This adds an extra layer of difficulty for people who are members of socioculturally diverse groups, because it can produce a mismatch between their expectations, beliefs, values, and practices and those shaping the health services offered. Kidd et al.’s (2013) study on Māori men managing chronic illness, for example, found they often experienced health services as impersonal and misaligned with Māori values such as whakawhanaungatanga —the process of building strong relationships with others. These experiences led to whakamā, feelings of shame, embarrassment, or diminishment, which in turn resulted in delays in seeking help.

What do we mean by culture?

The word culture can have multiple meanings. Here we take a social science perspective to describe how groups of people can share a “culture”, that is, a way of seeing and doing things, often involving objects, practices, and shared forms of meaning making. Culture can shape people’s conscious and unconscious belief systems, which in turn shape their thoughts and behaviour.

In another example, Upsdell et al. (2024) explored why Pacific peoples are underrepresented in chronic pain services despite experiencing high levels of pain-related disability and psychological stress. The researchers found significant disconnects between how their Sāmoan participants understood pain—and what they considered appropriate treatment—and the approaches used in Western health services in Aotearoa New Zealand. For example, participants interpreted pain as having causes beyond physiology, including spiritual factors. Pain was also viewed affirmatively, with endurance of pain seen as demonstrating stoicism – a culturally valued trait – yet the health services were oriented around reducing pain and its associations with lower quality of life. The disjuncture between these two cultural approaches to interpreting pain (i.e., the traditional Pacific and the Western healthcare clinic), meant pain was devalued by the healthcare professionals while (potentially) valued by their patients. These different approaches to pain thus intra-acted in ways that shaped patients’ experience in their treatment.^[3]

Migrants are another group who are particularly vulnerable to a mismatch between their cultural perspectives regarding healthcare and those shaping the health systems they need to use in their host country. In regions with high levels of migration, therefore, many people navigate healthcare systems that may not align with their cultural expectations, understandings, or preferences. For example, Asian people make up approximately 17% of the population in Aotearoa New Zealand (Stats NZ, 2024), and research on their healthcare experiences underscores the importance of healthcare professionals understanding key aspects of their culture, including values, customs, and dietary practices (e.g., Chiang et al., 2021). For instance, patients are more likely to follow dietary recommendations when they recognise and regularly consume the foods suggested by dieticians (Xie et al., 2022).

Differentiated social positions within communities, as well as between them, can also shape treatment experience. Pacific peoples in Aotearoa, for example, have normative expectations for couples to have children, and Pacific women have slightly more live births compared to the total population. They are also an ethnic minority. These intersecting factors complicate the experience of infertility and seeking treatment. On one hand, infertility is stigmatised within many Pacific communities, making it difficult for individuals to discuss or seek support. At the same time, racist stereotypes about Pacific peoples’ fertility can lead to their reproductive health being problematised in public discourse. As a result, couples seeking fertility treatment must navigate a double stigma that affects the experiences of treatment by creating barriers to both accessing care and receiving social support (Fehoko & Shaw, 2023).

Wider social and organisational discourses

So far, we have discussed social positions and cultural perspectives. Here, we consider the wider social and organisational discourses as a third socio-cultural element shaping the treatment-experience assemblage. We use the term “discourse” to describe broad forms of shared sense-making that make objects, issues, and/or people intelligible in a particular way. We saw this in our examples of LGBTQIA+ experiences of cancer treatment above, where cis-heteronormativity shaped the way their bodies and identities could be understood. Discourses, therefore do not neutrally describe reality; “they bring realities (including who we are) into being” (Miller & Rose, 2008, p. 252).

Wider social discourses are those that circulate in public spheres. Typically, they are disseminated by organisations with power to shape public discourse, such as those related to media, government, law, education, medicine, health, and psychology. Some discourses remain mostly circulating within an organisational arena (we might call these “organisational discourses”), while others circulate across a range of sites and actors, related to and beyond organisations, and may be reproduced in everyday talk. These “wider social discourses” have significant power in shaping collective meaning making across large parts of society. As we outline below, some examples in relation to treatment experiences include healthism, positivity, the curative imperative, and compliance.

Healthism

Healthism is a discourse that links health to morality, and which circulates across society through a range of actors (see Riley et al. Chapter 1.4). For example, public health campaigns often seek to change behaviour by raising awareness around risks for disease, such as those that associate lung cancer with smoking. But, in so doing, they can circulate healthism, which constructs individuals as morally responsible for their health through lifestyle choices, and by association, for their illness. Consequently, people with lung cancer may be judged for their perceived “poor” lifestyle choices,^[4] which can shape how they are treated by healthcare practitioners and those who might otherwise offer social support, reducing their possibilities for affirmative treatment experiences (Brown & Cataldo, 2013; Chapple et al., 2004).

Positivity

Positivity discourses are those that position upbeat emotional management as a valued—even moral—psychological orientation to life. Although positivity discourses are not new, they are highly common in contemporary sense making and form an important part of the socio-cultural fabric of contemporary treatment assemblages. Maintaining a positive outlook can have beneficial psychological and physical effects. For example, Winkler’s (2022) participants described the importance of having a positive attitude when adjusting their life goals and priorities so they could focus on what they could do and not what they could not, when dealing with their ‘new normal’ of being dependent on home parenteral nutrition (intravenous feeding). However, positivity does not always lead to positive outcomes, and relationships between positivity, treatment experiences, and health outcomes are complex and nuanced (Aspinwall & Tedeschi, 2010).^[5]

Despite this complexity, the need for positivity when facing illness and treatment is a dominant social discourse. In this context, individuals may adopt a positive attitude toward treatment for various reasons—because they believe it will help, because it brings them comfort, or because they feel societal or interpersonal pressure to do so, including from their healthcare practitioners, friends, and family (Crossley, 2003; Egan et al., 2016; Wilkinson & Kitzinger, 2000).

Cheer as an example of positivity in treatment

In their ethnographic study of a neuromuscular clinic in Canada, Setchell et al. (2019) examined the deliberate use of positivity to create a strengths-based focus and a cheerful atmosphere aimed at reducing distress and anxiety, particularly for children in clinical settings. Their research revealed the complexities of how “cheer” was employed and the various effects it produced.

For example, the authors describe a 10 year-old boy with Duchenne muscular dystrophy who was encouraged and cheered on while performing a lung capacity test. Initially, this encouragement was validating when he could complete the task. However, as his degenerative disease progressed, his inability to meet the task’s previous score highlighted his decline, reinforcing a sense of failure in relation to normative health standards.

This example shows that while positivity can play a valuable role in treatment, it can also be harmful when it dominates at the expense of other important aspects of care. Patients may need space to express grief and loss, have their non-normative bodies and lives accepted, and have their alternative experiences and embodied knowledge acknowledged.

The curative imperative

The “curative imperative” is a discourse that defines ideal treatment as treatment that “fixes” the broken body (Stramondo, 2022) and is an example of an organisational discourse connected to health and medicine. Seeking a cure often leads to the best outcomes, but the unquestioned application of this imperative can undermine people’s capacities for experiencing positive treatment. This occurs if the curative imperative reduces healthcare practitioners’ capacities to consider patient preferences and needs, and/or if it reinforces societal notions of normalcy. One example is the way cochlear implants are marketed. You may have seen social media advertisements of a child born deaf receiving a cochlear implant, then hearing their parent’s voice for the first time—framed as a “perfect” cure. However, as Robinson and Henner (2017, p. 1416) explain, “culturally identified deaf people inhabit a different centre of knowledge than the non-deaf … [the] core of this knowledge is the role of sign language in developing language, cognition, and social structures”. For those in the Deaf community, Deafness is a cultural identity not an impairment to be fixed, and this perspective—and associated possibilities for action—is masked by the dominance of the “curative imperative” (Burch & Kafer, 2010; Chapman, 2021; Garland-Thomson, 2011). Deaf Gain, is a term coined to “counter the frame of hearing loss as it refers to the unique cognitive, creative and cultural gains manifested through deaf ways of being in the world” (Bauman & Murray, p. 1). It therefore counters the curative imperative that ignores affordances of disabled bodies, and how the Deaf community can work through affirmative affects. For further discussion, see Graham & McGuigan’s section on the medical model of disability in Chapter 3.4.

The curative imperative can also divert resources from supporting people to live well with their health condition. For example, in her ethnographic study of a UK hospital treating patients with liver disease, Lynch (2024) showed how, in this setting, liver transplantation was considered the ultimate and most desirable treatment for patients with irreversible liver damage, shaping the hospital’s focus around transplantation and its imagined promise of a cure. And, since available donor livers are scarce, significant effort was devoted to creating a fair allocation system for this high-status treatment—benefiting only a select few. Meanwhile, far fewer resources were allocated to the work of a single nurse who provided ongoing patient care through regular paracentesis, a procedure that removes fluid buildup and helps patients maintain function with their existing liver.

Compliance discourses

Rates of people not doing what their healthcare practitioner told them range from around 25% to 80%, depending on the study, illness, and treatment being considered (Van Dulmen et al., 2007), with the World Health Organisation estimating that only 50% of people managing chronic health conditions take their medication as prescribed (World Health Organization, 2003). Thus many people regularly do more, less, or differently than prescribed, even though this is linked to worse patient health outcomes (see for example, Pal et al., 2021) to the extent that a UK clinician-led review argued that developing interventions to increase patients’ adherence to prescribed treatments “may have a far greater impact on the health of the population than any improvement in specific medical treatments” (Horne et al., 2005, p. 10). Not following prescribed treatments as directed is thus a common but problematic practice, and several discourses have been used to frame this issue, with implications for how people experience treatment. These discourses include compliance, adherence, concordance, and engagement.

Compliance

Compliance is “the extent to which the patient’s behaviour matches the prescriber’s recommendations” (Horne et al., 2005, p. 12). The compliance discourse constructs patients in a subordinate role to the practitioner, and produces several subject positions, including health professionals as experts, and patients as enactors of that expertise. But, since many people do not enact that expertise, this produces other subject positions, including frustrated/concerned/anxious doctor and demoralised/failed/bad patient. A compliance approach can therefore leave both parties in a lose-lose situation.

An example of a lose-lose situation when patients and practitioners operate within a compliance discourse

Penney et al. (2011) interviewed clinicians and Māori service users about their engagement with healthcare services. The researchers identified how the health professionals (14 non-Māori, 5 Māori) constructed their Māori patients as generally non-compliant, attributing this to factors such as ignorance, poverty, wilfulness, fatalism, and self-destructiveness. In contrast, the Māori participants gave detailed descriptions of actively trying to engage in recommended health practices, such as dietary change, but also finding this difficult, frustrating, sometimes distressing (e.g., medicine side-effects), and limited by structural barriers, despite being presented as simple and straightforward by their clinicians.

Adherence

Adherence is “the extent to which the patient’s behaviour matches agreed recommendations from the prescriber” (Horne et al., 2005, p. 12). Seeking a win-win situation for both patients and clinicians, the adherence discourse emphasises mutual agreement on treatment practice. The adherence discourse constructs patients and practitioners as active partners with equal, but different roles, producing several subject positions, including doctors as collaborative experts, and patients as health citizens making informed choices about their treatment.

However, health citizenship evokes responsibilities for people to act in ways that are associated with health. This “responsibilising” of individuals has the potential to produce anxiety, shame, and blame if a person does not achieve a stable state of health, since that is the measure of good health citizenship. Further, although adherence envisages the patient and doctor mutually organising a treatment regime together, if the patient does not enact it, then they risk being positioned as non-adherent. The discourse of “adherence” could therefore intensify the patient experience of failure, since non-adherence is both failing to comply with treatment and failing to comply with health citizenship.

Contraceptive decision-making scripts

Morison et al. (2022) interviewed people in Aotearoa New Zealand and South Africa about their experiences with contraceptive services where they were offered a long-acting reversible contraception option. The researchers identified three decision-making scripts that shaped contraceptive choices. In relation to the adherence discourse described above, the collaborative decision-making script positioned both providers and patients as active participants. While this script accounted for interactive knowledge sharing between patient and doctor that helped level hierarchical power dynamics, the providers remained positioned as the “experts”. Nonetheless, participants described collaborative decision making as their preferred approach, as distinct from the expert-led script, where healthcare providers dominated decision-making, and the patient-led script, which shifted full responsibility onto the patient.

Concordance

In response to the above critiques, the concordance discourse recognises that non-adherence/compliance may be a rational response for patients in relation to their personal perceptions of illness, treatment, and social context. Both doctor and patient are constructed as collaborative experts, tasked with working together to find a treatment that is likely to be a good fit for that person’s situation. The patient is positioned as self-determining, but within the parameters enabled by their social context; while the doctor is positioned as a collaborative partner who facilitates their decision making.

Although this approach helps level power differentials between practitioners and patients, the time needed to carefully understand a patient’s context is often greater than standard appointment times (Atal et al., 2019), and not all patients are able, or willing to act as collaborative experts. Examples include when health literacy is low, when expert knowledge is held as having more value—especially for the final decision, or when expert knowledge contradicts other valued ways of knowing or being (Chung et al., 2012; Horrocks & Johnson, 2014; Robson et al., 2024).

Further, despite the consideration of social context, concordance remains individualist, positioning the patient as an autonomous individual, and constructing decision making as an event between individuals in the consulting room. Concordance thus misses an understanding of “decision making being dynamic and embedded within a networked collective, the medical doctor being but one (although very often a crucially important) node in the network” (Dew et al., 2014, p. 40). One of us authors of this chapter, for example, has not taken medicine at the time prescribed for fear that the noisy packet would wake our partner. In this example, an assemblage of packaging, medications, loving partner subject positions, and bedtime schedules intra-act to produce nuanced moments of non-compliance/adherence.

An example of how patient attempts to define themselves become framed as non-adherence

Gibson et al. (2021) offer a case study of “Michael”, a young man with Duschenne muscular dystrophy (DMD), navigating being positioned as ‘non-adherent’ by his medical team. In the context of clinical meetings, Michael and his body are positioned within an assemblage of medical knowledge, clinician expectations and expertise, medical technologies, and parental anxieties, in which certain ideas and ways of being are valued, one of which is independence. Outside his home, Michael has a powered chair that facilitates his independence, but he resists having one in his home, which, within this framework is constructed as a problem. The researchers note how the power chair offers independence but also draws attention to Michael’s disability. In a world where disabled bodies are devalued, Michael wants to be like everyone else, and the non-powered chair facilitates that. At home, Michael’s assemblage, produced through non-medical human and non-human elements, offers affirmation in the subject position of “a teenager who sits in regular chairs” (p. 298). Within one assemblage Michael’s behaviour is understood as a problem that needs solving. Within the other, his desires and interests are prioritised, with clinical expectations constructed as the problem.

Engagement

The engagement discourse emphasises the need for patients to be actively involved, or “engaged”, in the treatment. This discourse is often prevalent in rehabilitation literature and incorporates considerations of patients’:

behaviour (such as if they do the recommended physiotherapy exercises)
physical and mental capacities to perform these behaviours
psychological motivation (Jull et al., 2019; Kortte et al., 2007).

Like the other compliance-related concepts discussed above, engagement can be an individualising concept, creating subject positions of the preferred engaged patient and the dispreferred disengaged patient. Seeking to address this, Bright et al. (2015, 2017) developed a relational construct of engagement, arguing that patients and practitioners are in mutually reinforcing, dynamic, and reciprocal relationships that enhance or reduce patients’ engagement with treatment. One example is when practitioners’ enthusiasm and belief in the practice enhanced patients’ motivation to engage with it. Read through assemblage theory, this is also an example of intra-action: neither the practitioner nor the patient was a stable entity, but rather changing in relation to each other as patients responded positively to enthusiastic practitioners, and vice versa.

As we have shown above, compliance, adherence, concordance, and engagement produce multiple dispreferred subject positions for patients. Further, these constructs primarily reflect an individualist perspective, rooted in broader neoliberal and healthism discourses that emphasise self-management through informed choice that, in reality, is often hard to do. The challenge of navigating self-management, collaborative decision making, and healthcare engagement is further intensified for members of marginalised groups, as these processes require resources—such as financial means and health literacy—that are often less accessible to them (Erickson & Polfuss, 2021).

Materiality

So far we have considered the “psycho-socio-cultural” elements of the treatment-assemblage, highlighting the importance of wider social and organisational discourses, along with social positions and cultural perspectives. There is also the “material”, a term used to refer to elements of the physical world that include bodies and their components, as well as the spaces, places, inanimate objects, organic living and non-living matter, and technologies. Green and social prescriptions, for example, leverage these relationships, recognising that interconnections between people, place, and nature may enhance treatment experience and outcomes (Husk et al., 2020; McGrath & Reavey, 2018; Palmer et al., 2017; Pretty et al., 2005; Tsunetsugu et al., 2010).

The body

Disease symptomatology shapes the experience of treatments because different conditions require treatments that vary in how pleasurable, invasive, or distressing they may feel. The specific characteristics of a disease also determine where treatment takes place; these healthcare places and spaces are not a “‘backcloth’ for human practice” but intrinsic to it (Fox & Powell, 2023, p. 229). For instance, hospitals have greeter services to allow people to negotiate complex buildings and to experience a sense of care when they enter. In this example, the human (e.g., patients, visitors, greeters, cleaners, porters) and nonhuman (e.g., hospital entrance, wayfinding marking, information kiosk, dedicated sections for specific treatments) are enmeshed in an unfolding process that is both relational and situated in time and place. For example, the more familiar people become with a hospital, the less likely they are to need the greeter service or wayfinding.

Examples of how the materiality of place/space interconnects with the psycho-social elements of treatment experience

Age: Young people may have less experience to draw on when negotiating the healthcare systems involved in their treatment, and their bodies or identities may not “fit” within systems often designed for either adults or children. Sligo et al. (2019) showed this in her research with young people with asthma or cancer, aged 15-27, whose experience of treatment was shaped by an institutional context where they often felt at a disadvantage because of their age. This included, not knowing the role of different clinicians or being put in hospital wards with much younger children. In this context, they were often reliant on clinicians to recognise their specific needs, as in the example below:

The hardest thing was arriving at the hospital and they took us through the oncology ward and everyone else was really sick. Really, really sick. That was really frightening to be honest. And then my doctor came in and there was a lot of other doctors with her, which was really intimidating. She was lovely. She really took the focus away from having that many people there (Sligo et al., 2019, p. 664).

Ethnicity: Seeking to address health inequities in accessing cervical screening and associated higher incidents and mortality from cervical cancer in Māori women, Ormandy et al. (2024) piloted a community colposcopy clinic at an urban marae. Users of the service described how having the service in a place organised around their own cultural values gave them a sense of welcome, safety, and confidence that they would be understood. They also had less logistics to manage, including travel distances, concerns around parking, and childcare, since children had a safe place to play.

In her autobiography of receiving a short course of adjuvant chemotherapy for breast cancer, Greenhalgh (2017, p. 340) highlighted the importance of including a material analysis for understanding the experience of treatment. She described how her treatment produced three kinds of “strangeness” in experience: the “existential strangeness” of biographical disruption that we covered in Riley et al. Chapter 1.5, but also “material strangeness” and the “lived body strangeness”. Material strangeness related to how and where the treatment was delivered, including unfamiliar buildings, uniformed escorts, a large room that hosted several pods treating individual patients, intravenous delivery of multiple bags of chemicals – some of them poisonous to the touch, specialist nurses performing high levels of emotional care and technical expertise, and a cold cap that dropped the temperature around her head to -4° to reduce hair loss. The effect of this treatment produced a “lived body strangeness”, of experiencing the world through an unfamiliar and unpredictable chemotherapy-induced sick body of unfolding dryness, nosebleeds, constipation, diarrhoea, ulcers, acne, cold sores, and soggy toenails. These existential, material, and lived embodied strangenesses characterised the assemblage of her chemotherapy therapy, which, delivered over 12 weeks—and with the promise of a good prognosis—added temporality into this unfolding strange process of being made sick in order to be made well.

Technologies

From a more-than-human theory perspective, materiality, including technologies, have agency because they affect other elements in the assemblage.^[6] Technologies are therefore not neutral tools, but rather shape what is known, possible, and expected. Linked to productive power, technologies render the body knowable and “actively intervene in the situations in which they are put into use” (Mol, 2000, p. 9). For example, menstruation tracking apps teach users to understand their cycle as hormonal, and can increase users’ capacities for communication with their healthcare provider by providing a record of their periods (Riley et al., 2025). These examples align with the design intentions of digital health technologies, which are to empower users by providing information that will enhance their ability to live more autonomous, healthier—and thus—happier lives.^[7]

However, these and other technologies are products of human decisions and thus often underpinned by existing norms and discourses, such as those related to health citizenship (Lupton, 2014). Digital health apps, for example, reproduce a vision of a controllable and productive body that, aligning with healthism, positions people as individually responsible for keeping their bodies in stable states of health through making “good” lifestyle choices—such as using a health app. This logic produces a form of health citizenship, which, as we have discussed above in relation to compliance discourses, and in Riley et al. chapters 1.4 and 1.5, can create dis-preferred subject positions associated with stigma, anxiety, and shame for people experiencing illness.

In relation to treatment experiences, digital health technologies extend the reach of health citizenship to include using digital health technologies knowledgeably to manage their health—that is, being a “digitally engaged patient” (Lupton, 2013; Petrakaki et al., 2021). As we show in our text box below, being a digitally engaged patient can be a complex endeavour, with the risk of becoming a failed digital health citizen, thereby undermining the treatment experience.

Figure 1.6.1 Photo of a continuous glucose monitor attached to a person’s arm. (Photo by Sweet Life, via Unsplash. Unsplash licence. Photo has been cropped)

The psycho-socio-material dynamics of using continuous glucose monitors

Along with careful management of eating and exercise, people living with type 1 diabetes typically require regular administration of insulin, a hormone that manages blood glucose. Successful management of their diabetes reduces people’s risk of a range of serious health problems. To help, biosensors, such as continuous glucose monitors, can be inserted under people’s skin to offer real time, or close to real time, measures of blood glucose. These technologies enable patients with diabetes to monitor their physiological markers in ways that were once the domain of healthcare professionals. Research shows that using these technologies can enhance glycaemic control and increase psychological wellbeing and treatment satisfaction (Marks et al., 2022; Natale et al., 2023).

Yet, the uptake, and sustained use, of these technologies has not been at the level expected. Accounting for this discrepancy, researchers have sometimes positioned patients as failed digital health citizens. In contrast, researchers considering the social context within which these technologies are used highlight how the technology can reduce people’s ability to live a life that feels normal or valuable. As we outline below, this is because such technologies can increase labour, elicit negative feelings, and produce an unwanted sense of self (Lupton, 2017b; Natale et al., 2023).

Labour: Rather than freedom-creating, health technologies may be experienced as labour-creating, since they require adjustment and regular self-monitoring, work that people can come to resent.

Surveillance: Although patients are self-monitoring, they need to discuss the outputs with their healthcare professionals, creating a sense that every action related to their glycaemia—including what they ate, drank, or how they moved—would be under future scrutiny. As a participant in Danesi et al.’s, (2018, p. 130) study on glucose monitoring, said “Sometimes I say to my diabetologist ‘Are you done Big Brother?!’”

Negative affect: People report that their biometric data can make them depressed, anxious, guilty, demoralised, or worried, especially when they felt that they had implemented the recommended health practices but still received negative results.

Unwanted selves: People sometimes report struggling between being a “good” self-managing patient and a “bad” obsessive one. Some feel they lose agency in how they manage their condition since they have to respond to the monitor and not their own sense of what to do. Others find that the technology produces a constant, and unwanted, reminder that they are ill.

Social media is also an important technology shaping the experience of treatment, such as when people share experiences online and use that to create collective forms of activism. We mentioned this process in relation to how Long COVID became a recognised illness within the medical establishment in Riley et al. Chapter 1.5. Relatedly, people can use social media to influence treatment practices, and thus their experience of treatment. For example, in a study where individuals shared their difficult experiences with intrauterine device (IUD) insertion, they recognised how common their experiences were—including pain, inadequate practitioner communication about pain expectations, insufficient pain relief, and the dismissal of their concerns (Taghinejadi et al., 2024). From sharing these experiences, they engaged in collective action, ultimately leading to the U.S. Centre for Disease Control and Prevention updating its guidelines, recommending various forms of pain relief (Curtis, 2016).

Organisations

Above, we have separated out, and discussed some of the key psycho-socio-material elements that shape people’s experiences of healthcare treatment. In the context of treatment, many of these elements are situated within medical, governmental, non-governmental (NGO), and/or commercial organisations, which often operate in interconnected ways. For example, NGOs may provide services funded by governments, or they may step in to address gaps where government services are lacking. Balint et al.’s (2024) study of U.S. blog posts from meningitis survivors, for example, highlighted the crucial role of charities in meeting patient needs not addressed by health services. As we show below, treatment possibilities can be produced through relations between governments and commercial organisations, and are also shaped by the sectors in which they occur.

Direct to consumer advertising as an example of the intersections between different organisational sectors

Direct-to-consumer advertising (DTCA) describes when companies communicate to consumers about their products, including through television and billboard advertising. New Zealand and the United States are the only two industrialised countries that legally allow DTCA for prescription medicines, which usually have an explicit recommendation that consumers speak to their physicians about the product.

There is strong consensus that DTCA shapes people’s desires and behaviours (Mintzes, 2009), and multiple concerns have been raised (e.g., Bélisle-Pipon, 2022; Every-Palmer et al., 2014; Gilbody et al., 2005; Schulz et al., 2023), which include:

emphasising benefits and minimising risks
overemphasising pharmaceutical solutions and disease-mongering
promoting expensive medicines
being misinterpreted as health information
negatively affecting doctor-patient relationships
producing over prescribing
having no demonstrable, additional beneficial health outcomes.

Social media is also an important site for DTCA. Many people seek information and/or support to enhance their experience of treatment on social media (Gupta et al., 2022). In this space, which is less regulated than traditional broadcasting, marketers employ a range of practices including developing information websites, apps and online support communities; creating “grass roots” lobbying groups; and covertly interacting online with people discussing treatments (Bélisle-Pipon, 2022; Rosário & Dias, 2023). Such covert behaviour has marketing terms such as, “priming the market”, “stealth branding”, “unbranded social media engagement”, and “seeding disease education” (Lupton, 2017a, p. 71).

The concern is that commercial interests undermine the best interests of the people being targeted. Health marketing therefore needs to employ ethical benchmarks and governments develop regulations to uphold these. (See Bélisle-Pipon’s (2022) case studies read through the lens of different ethical frameworks.)

Sectors of care

One way to consider how organisations shape the experience of treatment, is to look at the different sectors where care is delivered. As we outline below, these can be categorised into three sectors of care: popular, professional, and folk (Kleinman, 1980; Lyons & Chamberlain, 2006; Stephenson et al., 2003).

The popular sector refers to everyday, lay people’s care, including self-care. Juicing fruit to boost one’s immunity when ill, watching cat videos on social media, or following wellness influencers are examples. Taking over the counter medications is also a lay person’s practice, but requires the professional sector.

The professional sector refers to treatment delivered by healthcare professionals, such as pharmacists, nurses, doctors, and other allied healthcare professionals and technicians. Typically, the kind of treatment they offer occurs in organisational settings, including hospitals, diagnostic and screening centres, and hospices; and is performed by people with qualifications recognised by an awarding body.

This sector is part of a globalised Western medicine that shares knowledge and best-practice. Patients might, therefore, expect relatively standardised treatment, but research shows significant variation. For example, pregnancy is expected to last 40 weeks in the UK and Aotearoa New Zealand, but 41 in France, which means conversations about treatments, such as inducing labour, start later for French patients. As Payer wrote in her germinal text on medicine and culture, “while medicine benefits from a certain amount of scientific input, culture intervenes at every step of the way” (Payer, 1988 p. 26; cited in Lyons & Chamberlain, 2006, p. 246).

The folk sector relates to complementary or alternative treatment practices (“CAM”). These can be wide ranging, offered by practitioners such as traditional healers, acupuncturists, reflexologists, and so forth. Despite their heterogeneity, they often share a more holistic approach to healing, considering a person’s wider context, which may include their cultural worldviews and spirituality. CAM appointments also tend to be longer than professional sector treatments. Combined, such appointments can give a sense of being treated as a unified whole (Marques et al., 2021).

Many householders engage in “healthcare pluralism” (Helman & Helman, 2007, p. 81) by using CAM alongside professional medicine, for example, supplementing prescribed treatments, like antibiotics, with folk sector treatments, like probiotics and high doses of vitamins (Ramadurai et al., 2016). Despite this normative pluralistic approach, people might not tell their healthcare providers that they are doing so, either because it does not arise in consultation, or because they fear judgement or critique of their choices (Eisenberg, 2002). See text box below for an example facilitating these connections (also see Brittain & Kora Chapter 1.1).

Combining Rongoā Māori (traditional Māori healing) with Western treatments

Koea et al., (2024) trialled a Rongoā Māori-Western medicine collaboration in a general surgical outpatient setting. Both practitioners were Māori but trained in different traditions; one as a surgeon and clinical researcher, the other as a traditional Rongoā Māori practitioner and registered Medical Herbalist. They trained each other in their approaches, and then offered shared patient sessions where patient whānau (family) were welcome. Both patients and practitioners reported benefitting from the shared sessions. Benefits included how the patients’ families became more active participants in supporting the patient; how the practitioners could collaborate (e.g., treating a skin condition with both cream and antibiotics that worked “hand-in-hand”); and that the approach provided a holistic, and humanising, sense of care.

People may also turn to CAM because of concerns around the pharmaceutical industry, represented in “big Pharma” discourses that position it as exploitative and profit driven in ways that harm people’s health. However, this turn to CAM can be leveraged by pharmaceutical companies when they manufacturer what were once folk remedies on an industrial scale, and by the wellbeing industry, which positions itself as distinct, despite its huge commercial interests^[8] and lower regulation since supplements are not classified as medicine. The outcome is that patients might be negotiating multiple concerns around “Big Cam”, “Big Herba” and “Big Wellbeing” (Davies, 2015; Lyons & Chamberlain, 2006; Roche, 2023).

Connections, capacities, and lines of flight

So far, we have discussed how the experience of treatment is shaped by multiple elements that operate in different spheres. These are summarised in the textbox below.

The multiple elements of a treatment-experience assemblage

the personal (e.g., personal interpretations, life histories, individual differences)
socio-cultural (e.g., social positions, cultural perspectives, wider discourses)
material (e.g., physical bodies and components, disease physiology, technologies, space and place)
organisational, operating at the intersections of the discursive and the material (e.g., government bodies, traditional and social media, and professional and complementary/alternative health sector)
temporal, operating both in relation to linear processes (e.g., when a disease progresses or goes into remission, or the unfolding of the assemblage), and non-linearly (e.g., when the mind draws on past memories or future imaginaries to make sense of the present).

The experience of treatment is thus complex, socially shaped, relational, and embedded in power relations. When designing treatments, or trying to better understand a patient or loved one’s experience of treatment, we therefore need to consider these multiple elements and their complex interplay. To help conceptualise how those diverse elements connect together we have drawn on the concepts of assemblage (Deleuze & Guattari, 1987) and intra-action (Barad, 2007). We offered a practical example of these concepts, drawing on Bright et al.’s, (2015, 2017) work on patient engagement, where patients and practitioners were changing in relation to each other, as patients responded positively to enthusiastic practitioners, and vice versa.

Connections

In mainstream psychology, health models might theorise that when certain factors come together, it leads to a particular outcome, and that interventions might target one or more of those factors to change the outcome. The factors in these health models, such as self-efficacy, are theorised as relatively fixed and measurable (for further discussion see Riley et al. Chapter 1.2). In contrast, elements in an assemblage are conceptualised as part of in a dynamic unfolding process, only momentarily taking a particular form as they intra-act with each other.

Elements can only intra-act, though, if they are connected in some way, so the more connections there are within an assemblage, the greater the available capacities for action are available. For example, in our discussion of sectors of care above, we highlighted how people might engage with multiple sectors of care, but not disclose these to their different practitioners for fear of judgement. From an assemblage perspective, the lack-of-acceptance discourses that produce people’s fear of judgement, and the lack of information that the practitioners subsequently receive, means potential connections are not made. Without these connections, both parties’ capacities for action are reduced.

Capacities for action

In focusing on the connections between elements, and valuing the capacities for action enabled by them, assemblage theory suggests that we can assess how healthy an assemblage is by exploring whether people’s capacities for action are increased or diminished within a current assemblage (Fox & Powell, 2023). As Lupton (2019, p. 2002) explained, the question we can ask from this perspective is “What relational connections, affective forces, and agential capacities are generated?”. For example, as we showed above, although imperatives for positivity are often deployed with positive intent (e.g., to enhance health), in practice, they can sometimes reduce patients’ capacities for action, such as their ability to express feelings of fear and loss. A focus on connections that maximise capacities for action also helps us recognise that an environment that is good for one person may not be good for another, rejecting the idea of finding a universal correct solution (Fox & Powell, 2023).

How assemblage theory throws light on non-adherence, by Melinda Lewthwaite

My PhD work employed interviews and food diaries with women with irritable bowel syndrome (IBS). Assemblage theory offered insights into how and why these women did not follow treatment advice for symptom alleviation. For example, Bella (a 28 year-old Pākehā teacher) explained how her doctor prescribed her laxatives to use immediately after she realised a food had triggered her symptoms, which included constipation, pain, and bloating. However, this treatment only sometimes worked. At other times Bella experienced no effect, or too much effect very quickly.

In the absence of a predictable and knowable future outcome, Bella often delayed taking laxatives until she was in a place she felt able to respond to their potential impact, such as when she was at home, rather than work, and with no other responsibilities (e.g., childcare). Her experience of unpredictable bodily experiences, situated within her social context, differed from her doctor’s framing of her as being able to attend to symptoms as soon as they arose, and this caused her further distress:

If I do end up at the doctor they’re like why did you leave it so long, and it’s always my fault… I’m gonna have to explain this to the doctor who’s gonna judge me for not fixing it sooner when I physically couldn’t

In Bella’s—and other participants’ similar stories—I understood their experiences to be part of a treatment assemblage that included dynamic and unpredictable connections between food and bodies, as well as wider discourses, such as healthism. This treatment assemblage produced these women as failed health citizens because they were not seen to be “good” self-managers, appropriately active in their own care (Ellis et al., 2017). I also saw parallels with Mol’s (2008) analysis of diabetes treatment assemblages in how the “choices” available to those with chronic health conditions often fail to take into consideration the varied contexts and messiness of lives within which self-care occurs.

Lines of flight

Within an assemblage, are “territorialising” forces that attempt to constrain and impose stability and order, and “de-territorialising” forces that produce new connections and reformulations, enabling the assemblage to dynamically change into new configurations. In this process of change, sometimes a threshold is crossed that produces a “line of flight” into a completely new assemblage (Deleuze & Guattari, 1987). For example, the pilot community colposcopy clinic at an urban marae we described earlier (Ormandy et al., 2024) could be theorised as a line of flight—transforming the treatment assemblage from hospital-difficulties-unfamiliar-no childcare, to community-accessible-childcare-safe feeling. Should the clinic continue, this new assemblage may, in turn, become de-territorialised, with the potential for further lines of flight. Viewed as an assemblage, this theoretical framework conceptualises the experience of treatment as a continuous emergent process—quite different to what we might otherwise imagine as ideal treatment practices, such as finding the “right” way to do it and sticking with it.

An assemblage thought experiment

The New Zealand Cancer Action Plan 2019–2029 (Ministry of Health, 2020) includes several recommendations to improve cancer diagnosis and treatment outcomes. Alongside initiatives such as managing the distribution of specialist cancer surgical services and ensuring early access to new medicines, are expectations of supporting the use of traditional and complementary therapies within well-coordinated care plans.

These guidelines are put into practice through “treatment mapping”, a process in which clinicians outline a patient’s entire treatment journey (e.g., for breast cancer). This involves identifying the services involved, gaps, efficiencies, and points of communication needed between different practitioners or sectors of care, thereby developing connections between the elements in the assemblage. By mapping out the treatment process, clinicians and patients can explore a wider range of treatment options, fostering a more comprehensive and connected approach to care.

Activity: Extending the idea of treatment mapping practices through the concept of assemblage – identify a treatment that you, or someone close to you, has experienced recently. On separate post-it notes, small pieces of paper, or digital versions on miro write down the different elements of that treatment experience considering the:

psychological (e.g., personal interpretations, emotions)
socio-cultural (e.g., positionalities, cultural perspectives, organisations, discourses of health)
material (e.g., physiology of disease specificities, hospital buildings, technology).

Organise your examples into piles of similar elements on a piece of paper and draw lines between these themes to show how they connect. Reflect on how these connections shaped that experience of treatment. Notice too, if there are some elements with less or no connections. Using a different coloured pen draw connections between those elements that are not connected and reflect on how the experience of treatment might have differed if these elements were able to affect each other through that connection. What affordances are made possible with these connections?

If you want to take this thought experiment one step further, see if you can identify any territorial forces holding your assemblage together (e.g., take-for-granted ways to understand or do things). Can you imagine a line of flight to a different assemblage?

Conclusion

In this chapter, we aimed to address the question: How do people experience treatment? Using assemblages as an organising concept, we have illustrated how people’s experiences of treatment are not just individual, but shaped by multiple, intersecting, psycho-socio-material elements. We discussed how these elements represent a range of components in the “treatment assemblage” and showed why they matter if we want to understand how people experience treatment. These elements included:

The personal (“psycho”), such as:
- personal interpretations
- life histories
- individual differences.

The socio-cultural, such as:
- social positions—including intersecting social categories related to a person’s gender, sexuality, ethnicity, race, class, dis/ability, and body size, as well as social identities forged through wider social discourses, such as motherhood
- cultural perspectives that shape expectations and interpretations of treatment, with the potential to create disconnect for people from cultural views that differ from those providing health services
- social and organisational discourses that can create imperatives for both patients and practitioners, such as positivity. We also considered how healthism and associated health citizenship shape treatment experience, and how many of the subject positions produced in contemporary health discourses make the experience of treatment fraught with the risk of dispreferred identities and associated shame and anxiety.

The material, which, within more-than-human theory, has agency since it affects other elements in the assemblage, including how people think and feel about their treatment. These elements include:
- elements of the physical body
- disease symptomology
- technologies used in treatment
- the space and place where treatments happen.

Organisations: At the intersections of discourse and materiality, we also considered medical, government, non- governmental, and commercial organisations, such as the pharmaceutical and wellbeing industries, as well as social and traditional media, and the popular, professional, and folk sectors where treatment occurs.

In examining these elements, we addressed our critical health psychology pou by paying attention to issues of power and equity (e.g., in our discussion of discourse), and moving beyond individualism to a more socially situated approach with our emphasis on locating the person—and their sense making—in their socio-material context. We have also foregrounded theoretical thinking, drawing on more-than-human theory, especially Deleuze and Guattari’s (1987) concept of assemblage and Barad’s (2007) intra-action. This allowed us to theorise the elements shaping treatment experience as part of dynamic system of multiple discursive and material elements, co-constituting each other through their intra-actions and territorialising and de-territorialising forces. This theoretical framework also gave us a way to conceptualise a healthy treatment assemblage as one that is highly networked, with multiple connections that offer a wide range of capacities for action. It also allowed us to consider how lines of flight represent moments of radical change, catapulting people into a new assemblage.

Discussing critical disability studies, Goodley et al., (2019, p. 976) argued that “the key purpose of theory is to understand and intervene in the social world … contemporary social theory, if it is to offer anything, has to be attuned to the complexities of the contemporary moment”. In this chapter, we hope to have shown the usefulness of assemblage theory for students, researchers, and practitioners seeking to better understanding the complexities of how people experience treatment, and offered a conceptual position from which to intervene and develop more healthy treatment assemblages.

This chapter also completes Part One of the book. Drawing together this chapter, and the range of issues we have covered in Part One, we finish with a call for psychologists to include the socio-material in their thinking. We consider this move a de-territorialising act that can be contrasted with individualism, which acts as a territorialising force in psychology that often fixes our thinking, reducing the possibility for different connections to be made and new opportunities to arise. A psycho-socio-material approach thus offers a potential line of flight from the territorialised assemblage of individualistic health psychology, and lines of flight to new ways of thinking and doing health psychology.

Knowledge Check

Want to know more?

Watch: Professor Jane Ussher from the “Out with Cancer” Study on experiences of cancer and cancer survivorship

Presentation: Do LGBTQI+ people with cancer have unique needs and experiences?
Presentation: Translating findings from the out with council study into training materials.

Listen:

Dave Nicoll’s Paradoxa Podcast with Professor Barbara Gibson, who holds the Holland Bloorview Kids Rehabilitation Foundation Chair in Childhood Disability Studies.

Read:

Gibson, B. E., Fadyl, J. K., Terry, G., Waterworth, K., Mosleh, D., & Kayes, N. M. (2021). A posthuman decentring of person-centred care. Health Sociology Review, 30(3), 292-307. https://doi.org/10.1080/14461242.2021.1975555
Mol, A. (2008). The Logic of care. Health and the problem of patient choice. Routledge. https://doi.org/10.4324/9780203927076

References

Adams, J., McCreanor, T., & Braun, V. (2008). Doctoring New Zealand’s gay men. The New Zealand Medical Journal, 121(1287), 11–20. http://www.nzma.org.nz/journal/121-1287/3414/

Aspinwall, L. G., & Tedeschi, R. G. (2010). The value of positive psychology for health psychology: Progress and pitfalls in examining the relation of positive phenomena to health. Annals of Behavioral Medicine, 39(1), 4–15. https://doi.org/10.1007/s12160-009-9153-0

Atal, S., Sadasivam, B., Ahmed, S. N., & Ray, A. (2019). Medication concordance in modern medicine–A critical appraisal from an Indian perspective. Journal of Family Medicine and Primary Care, 8(4), 1313–1318. https://doi.org/10.4103/jfmpc.jfmpc_176_19

Balint, C., Deary, V., & Rodrigues, A. M. (2024). Life after meningitis: A qualitative study exploring survivors’ experience of living with sequelae. Psychology & Health, 1–19. https://doi.org/10.1080/08870446.2024.2373371

Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Duke University Press.

Bauman, H. D. L., & Murray, J. J. (Eds.). (2014). Deaf gain: Raising the stakes for human diversity. University of Minnesota Press.

Bélisle-Pipon, J.-C. (2022). Pharmaceutical marketing ethics: Ethical standards for more acceptable practices. Journal of Global Marketing, 35(1), 76–98. https://doi.org/10.1080/08911762.2021.1939469

Bright, F. A., Kayes, N. M., Cummins, C., Worrall, L. M., & McPherson, K. M. (2017). Co-constructing engagement in stroke rehabilitation: A qualitative study exploring how practitioner engagement can influence patient engagement. Clinical Rehabilitation, 31(10), 1396–1405. https://doi.org/10.1177/0269215517694678

Bright, F. A., Kayes, N. M., Worrall, L., & McPherson, K. M. (2015). A conceptual review of engagement in healthcare and rehabilitation. Disability and Rehabilitation, 37(8), 643–654. https://doi.org/10.3109/09638288.2014.933899

Brown, C., & Cataldo, J. (2013). Explorations of lung cancer stigma for female long‐term survivors. Nursing Inquiry, 20(4), 352–362. https://doi.org/10.1111/nin.12024

Burch, S., & Kafer, A. (2010). Deaf and disability studies: Interdisciplinary perspectives. Gallaudet University Press. https://doi.org/10.2307/j.ctv2rr3dgr

Calogero, R. M., Tylka, T. L., Mensinger, J. L., Meadows, A., & Daníelsdóttir, S. (2019). Recognizing the fundamental right to be fat: A weight-inclusive approach to size acceptance and healing from sizeism. Women & Therapy, 42(1–2), 22–44. https://doi.org/10.1080/02703149.2018.1524067

Came, H., O’Sullivan, D., Kidd, J. & McCreanor, T. (2020). The Waitangi tribunal’s WAI2575 report: Implications for decolonising health systems. Health and Human Rights Journal, 22 (1), p.209–220. https://pmc.ncbi.nlm.nih.gov/articles/PMC7348423/

Came, H. A., Herbert, S., & McCreanor, T. (2019). Representations of Māori in colonial health policy in Aotearoa from 2006-2016: a barrier to the pursuit of health equity. Critical Public Health, 31(3), 338–348. https://doi.org/10.1080/09581596.2019.1686461

CDC. (2024, October 15). Lung cancer among people who never smoked. https://www.cdc.gov/lung-cancer/nonsmokers/index.html

Chamalidou, C., Nasic, S., & Linderholm, B. (2023). Compliance to adjuvant endocrine therapy and survival in breast cancer patients. Cancer Treatment and Research Communications, 35, 100704. https://doi.org/10.1016/j.ctarc.2023.100704

Chapman, M. (2021). Representation and resistance: A qualitative study of narratives of Deaf cultural identity. Culture & Psychology, 27(3), 374–391. https://doi.org/10.1177/1354067X21993794

Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. Bmj, 328(7454), 1470. https://doi.org/10.1136/bmj.38111.639734.7C

Chiang, A., Simon-Kumar, R., & Peiris-John, R. (2021). A decade of Asian and ethnic minority health research in New Zealand: Findings from a scoping review. The New Zealand Medical Journal (Online), 134(1542), 67–83.

Chrisler, J. C., & Barney, A. (2017). Sizeism is a health hazard. Fat Studies, 6(1), 38–53. https://doi.org/10.1080/21604851.2016.1213066

Chung, G. S., Lawrence, R. E., Curlin, F. A., Arora, V., & Meltzer, D. O. (2012). Predictors of hospitalised patients’ preferences for physician-directed medical decision-making. Journal of Medical Ethics, 38(2), 77–82. https://doi.org/10.1136/jme.2010.040618

Crossley, M. L. (2003). ‘Let me explain’: Narrative emplotment and one patient’s experience of oral cancer. Social Science & Medicine, 56(3), 439–448. https://doi.org/10.1016/S0277-9536(01)00362-8

Curtis, K. M. (2016). US selected practice recommendations for contraceptive use. Morbidity and Mortality Weekly Report. Recommendations and Reports, 73(3), 1–77. https://doi.org/10.15585/mmwr.rr7303a1

Danesi, G., Pralong, M., & Pidoux, V. (2018). Embodiment and agency through self-tracking practices of people living with diabetes. In B. Ajana (Ed.), Metric culture: Ontologies of self-tracking practices (pp. 117–135). Emerald Publishing. https://doi.org/10.1108/978-1-78743-289-520181007

Davies, W. (2015). The happiness industry: How the government and big business sold us well-being. Verso books.

Deleuze, G. (1992). Expressionism in philosophy: Spinoza (M. Joughin, Trans.). Zone Books.

Deleuze, G., & Guattari, F. (1987). A thousand plateaus: Capitalism and schizophrenia (B. Massumi, Trans.). University of Minnesota Press.

Dew, K., Chamberlain, K., Hodgetts, D., Norris, P., Radley, A., & Gabe, J. (2014). Home as a hybrid centre of medication practice. Sociology of Health & Illness, 36(1), 28–43. https://doi.org/10.1111/1467-9566.12041

Eckhert, E., Lansinger, O., Liu, M., Purington, N., Han, S. S., Schapira, L., Sledge, G. W., & Kurian, A. W. (2022). A case-control study of healthcare disparities in sex and gender minority patients with breast cancer. Journal of Clinical Oncology, 40(16_suppl), 6517–6517. https://doi.org/10.1200/JCO.2022.40.16_suppl.6517

Egan, R., Llewellyn, R., Wood, S., Doherty, J., Albert, T., Walsh, C., Atkinson, K., & Kerslake, P. (2016). The Cancer Stories Project: Narratives of encounters with cancer in Aotearoa, New Zealand. Psycho-Oncology, 25(3), 300–307. https://doi.org/10.1002/pon.3914

Eisenberg, L. (2002). Complementary and alternative medicine: What is its role? Harvard Review of Psychiatry, 10(4), 221–230. https://doi.org/10.1080/10673220216224

Ellis, S. J. (2023). Are women-who-have-sex-with-women an ‘at-risk’group for cervical cancer? An exploratory study of women in Aotearoa New Zealand. Sexual Health, 21(SH23145), 1–8. https://doi.org/10.1071/SH23145

Ellis, S. J. (2025). Improving cervical screening rates among sexual minorities: Insights from Aotearoa New Zealand. Health Promotion Journal of Australia, 36(1), e904. https://doi.org/10.1002/hpja.904

Ellis, J., Boger, E., Latter, S., Kennedy, A., Jones, F., Foster, C., & Demain, S. (2017). Conceptualisation of the ‘good’self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions. Social Science & Medicine, 176, 25–33. https://doi.org/10.1016/j.socscimed.2017.01.018

Erickson, J. M., & Polfuss, M. (2021). Self-management and patient-centered care: A response to Fawcett’s 2020 essay. Nursing Science Quarterly, 34(2), 217–218. https://doi.org/10.1177/0894318420987182

Every-Palmer, S., Duggal, R., & Menkes, D. B. (2014). Direct-to-consumer advertising of prescription medication in New Zealand. New Zealand Medical Journal, 127(1401), 102–110. http://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2014/vol-127-no-1401/6278

Fehoko, E. S., & Shaw, R. M. (2023). From burdens to blessings: A Pacific perspective on infertility and assisted reproductive technologies in Aotearoa| New Zealand. In A. Kelly-Hanku, P. Aggleton, & A. Malcolm (Eds.), Sex and Gender in the Pacific (pp. 94–108). Routledge. https://doi.org/10.4324/9781003142072

Fox, N. J., & Powell, K. (2023). Place, health and dis/advantage: A sociomaterial analysis. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 27(2), 226–243. https://doi.org/10.1177/13634593211014925

Garland-Thomson, R. (2011). Misfits: A feminist materialist disability concept. Hypatia, 26(3), 591–609. https://doi:10.1111/j.1527-2001.2011.01206.x

Gibson, B. E., Fadyl, J. K., Terry, G., Waterworth, K., Mosleh, D., & Kayes, N. M. (2021). A posthuman decentring of person-centred care. Health Sociology Review, 30(3), 292–307. https://doi.org/10.1080/14461242.2021.1975555

Gilbody, S., Wilson, P., & Watt, I. (2005). Benefits and harms of direct to consumer advertising: A systematic review. BMJ Quality & Safety, 14(4), 246–250. https://doi.org/10.1136/qshc.2004.012781

Global Wellness Institute. (2024). 2024 Global Wellness Economy Monitor. Global Wellness Institute. https://globalwellnessinstitute.org/industry-research/2024-global-wellness-economy-monitor/

Greenhalgh, T. (2017). Adjuvant chemotherapy: An autoethnography. Subjectivity, 10, 340-357. https://doi.org/10.1057/s41286-017-0033-y

Gupta, P., Khan, A., & Kumar, A. (2022). Social media use by patients in health care: A scoping review. International Journal of Healthcare Management, 15(2), 121–131. https://doi.org/10.1080/20479700.2020.1860563

Heikkinen, H., Patja, K., & Jallinoja, P. (2010). Smokers’ accounts on the health risks of smoking: Why is smoking not dangerous for me? Social Science & Medicine, 71(5), 877–883. https://doi.org/10.1016/j.socscimed.2010.05.036

Helman, C. G., & Helman, C. (2007). Culture, health and illness (5th ed.). CRC press.

Horne, R., Weinman, J., Barber, N., Elliott, R., Morgan, M., Cribb, A., & Kellar, I. (2005). Concordance, adherence and compliance in medicine taking. London: NCCSDO, 2005(40), 6.

Horrocks, C., & Johnson, S. (2014). A socially situated approach to inform ways to improve health and wellbeing. In S. Cohn (Ed.), From Health Behaviours to Health Practices (1st ed., pp. 19–30). Wiley. https://doi.org/10.1002/9781118898345.ch3

Husk, K., Blockley, K., Lovell, R., Bethel, A., Lang, I., Byng, R., & Garside, R. (2020). What approaches to social prescribing work, for whom, and in what circumstances? A realist review. Health & Social Care in the Community, 28(2), 309–324. https://doi.org/10.1111/hsc.12839

Jones, L., Carroll, R., Parker, G., Steers, D., Ormandy, J., & Filoche, S. (2024). Developing a transgender and non‐binary inclusive obstetrics and gynaecology undergraduate medical curriculum in Aotearoa/New Zealand: Where are we at, and where do we need to be? Australian and New Zealand Journal of Obstetrics and Gynaecology, 64(1), 15–18. https://doi.org/10.1111/ajo.13746

Jull, J. E., Davidson, L., Dungan, R., Nguyen, T., Woodward, K. P., & Graham, I. D. (2019). A review and synthesis of frameworks for engagement in health research to identify concepts of knowledge user engagement. BMC Medical Research Methodology, 19(1), 211. https://doi.org/10.1186/s12874-019-0838-1

Kidd, J., Gibbons, V., Kara, E., Blundell, R., & Berryman, K. (2013). A whānau ora journey of Māori men with chronic illness: A te korowai analysis. AlterNative: An International Journal of Indigenous Peoples, 9(2), 125–141. https://doi.org/10.1177/117718011300900202

Kleinman, A. (1980). Patients and healers in the context of culture: An exploration of the borderland between anthropology, medicine, and psychiatry (Vol. 3). University of California Press.

Kortte, K. B., Falk, L. D., Castillo, R. C., Johnson-Greene, D., & Wegener, S. T. (2007). The Hopkins rehabilitation engagement rating scale: Development and psychometric properties. Archives of Physical Medicine and Rehabilitation, 88(7), 877–884. https://doi.org/10.1016/j.apmr.2007.03.030

Levy, J., & Romo-Avilés, N. (2019). “A good little tool to get to know yourself a bit better”: A qualitative study on users’ experiences of app-supported menstrual tracking in Europe. BMC Public Health, 19(1), 1213. https://doi.org/10.1186/s12889-019-7549-8

Lewis, E. (2015). Why there’s no point telling me to lose weight. British Medical Journal, 350, 1–3. https://doi.org/10.1136/bmj.g6845

Lupton, D. (2013). The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social Theory & Health, 11, 256–270. https://doi.org/10.1057/sth.2013.10

Lupton, D. (2014). Apps as artefacts: Towards a critical perspective on mobile health and medical apps. Societies, 4(4), 606–622. https://doi.org/10.3390/soc4040606

Lupton, D. (2017a). Digital health: Critical and cross-disciplinary perspectives. Routledge. https://doi.org/10.4324/9781315648835

Lupton, D. (2017b). How does health feel? Towards research on the affective atmospheres of digital health. Digital Health, 3, 2055207617701276. https://doi.org/10.1177/2055207617701276

Lupton, D. (2018). Fat (2nd ed.). Routledge. https://doi.org/10.4324/9781351029025

Lupton, D. (2019). Toward a more-than-human analysis of digital health: Inspirations from feminist new materialism. Qualitative Health Research, 29(14), 1998–2009. https://doi.org/10.1177/1049732319833368

Lynch, R. (2024, February 13). Hepatic logics and the fluid body: Situating liver disease. In Sickness and In Health, Auckland, New Zealand.

Lyons, A. C., & Chamberlain, K. (2006). Health psychology: A Critical Introduction. Cambridge University Press.

Marks, B. E., Williams, K. M., Sherwood, J. S., & Putman, M. S. (2022). Practical aspects of diabetes technology use: Continuous glucose monitors, insulin pumps, and automated insulin delivery systems. Journal of Clinical & Translational Endocrinology, 27, 100282. https://doi.org/10.1016/j.jcte.2021.100282

Marques, B., Freeman, C., & Carter, L. (2021). Adapting traditional healing values and beliefs into therapeutic cultural environments for health and well-being. International Journal of Environmental Research and Public Health, 19(1), 426. https://doi.org/10.3390/ijerph19010426

McGrath, L., & Reavey, P. (2018). The handbook of mental health and space: Community and clinical applications. Routledge. https://doi.org/10.4324/9781315620312

Mendonça, A. B., Pereira, E. R., Magnago, C., Medeiros, A. Y. B. B. V., Silva, R. M. C. R. A., Martins, A. D. O., & Meira, K. C. (2021). Suffering experiences of people with cancer undergoing chemotherapy: A meta‐ethnographic study. Nursing & Health Sciences, 23(3), 586–610. https://doi.org/10.1111/nhs.12839

Miller, P., & Rose, N. (2008). Governing the present: Administering economic, social and personal life. Polity Press.

Ministry of Health. (2020, February 3). New Zealand cancer action plan 2019–2029 – Te mahere mō te mate pukupuku o Aotearoa 2019–2029. https://www.health.govt.nz/publications/new-zealand-cancer-action-plan-2019-2029

Mintzes, B. (2009). Should Canada allow direct-to-consumer advertising of prescription drugs? NO. Canadian Family Physician, 55(2), 131.

Mol, A. (2000). What diagnostic devices do: The case of blood sugar measurement. Theoretical Medicine and Bioethics, 21, 9–22. https://doi.org/10.1023/A:1009999119586

Mol, A. (2002). The body multiple: Ontology in medical practice. Duke University Press. https://doi.org/10.1215/9780822384151

Morison, T., Ndabula, Y., & Macleod, C. I. (2022). The contraceptive paradox, contraceptive agency, and Reproductive Justice: Women’s decision-making about long-acting reversible contraception. In T. Morison & M.-J. J. Mavuso (Eds.), Reproductive Justice: From the margins to the centre (pp. 247–46). Lexington Books.

MTA research project. (2025). Menstruation tracking apps, bodies & identities. https://sites.google.com/view/mtas-digital-subjectivities/home

Murray, H. B., & Staller, K. (2022). When food moves from friend to foe: Why avoidant/restrictive food intake matters in irritable bowel syndrome. Clinical Gastroenterology and Hepatology, 20(6), 1223–1225. https://doi.org/10.1016/j.cgh.2021.09.017

Natale, P., Chen, S., Chow, C. K., Cheung, N. W., Martinez‐Martin, D., Caillaud, C., Scholes‐Robertson, N., Kelly, A., Craig, J. C., Strippoli, G., & Jaure, A. (2023). Patient experiences of continuous glucose monitoring and sensor‐augmented insulin pump therapy for diabetes: A systematic review of qualitative studies. Journal of Diabetes, 15(12), 1048–1069. https://doi.org/10.1111/1753-0407.13454

Ormandy, J., Phillips, S., Campbell, M., Haenga‐Melvin, B., Phillips‐Govind, L., & Filoche, S. (2024). ‘I was able to make a better decision about my health.’ Wāhine experiences of colposcopy at a marae‐based health clinic: A qualitative study. Australian and New Zealand Journal of Obstetrics and Gynaecology, 64(4), 368–374. https://doi.org/10.1111/ajo.13803

Pal, P., Sambhakar, S., Dave, V., Paliwal, S. K., Paliwal, S., Sharma, M., … & Dhama, N. (2021). A review on emerging smart technological innovations in healthcare sector for increasing patient’s medication adherence. Global Health Journal, 5(4), 183–189. https://doi.org/10.1016/j.glohj.2021.11.006

Palmer, D., Wheeler, J., Hendrix, E., Sango, P., & Hatzidimitriadou, E. (2017). “When I am out with her (befriender) I feel so good mentally and all my physical pains go unnoticed.” Social prescribing in Bexley: Pilot evaluation report. Canterbury Christ Church University. https://repository.canterbury.ac.uk/item/88343/-when-i-am-out-with-her-befriender-i-feel-so-good-mentally-and-all-my-physical-pains-go-unnoticed-social-prescribing-in-bexley-pilot-evaluation-report

Payer, L. (1988). Medicine and culture: Varieties of treatment in the United States, England, West Germany, and France. Henry Holt & Co.

Penney, L., Barnes, H. M., & Mccreanor, T. (2011). The blame game: Constructions of Māori medical compliance. AlterNative: An International Journal of Indigenous Peoples, 7(2), 73–86. https://doi.org/10.1177/117718011100700201

Petrakaki, D., Hilberg, E., & Waring, J. (2021). The cultivation of digital health citizenship. Social Science & Medicine, 270, 113675. https://doi.org/10.1016/j.socscimed.2021.113675

Phelan, S. M., Burgess, D. J., Yeazel, M. W., Hellerstedt, W. L., Griffin, J. M., & Van Ryn, M. (2015). Impact of weight bias and stigma on quality of care and outcomes for patients with obesity. Obesity Reviews, 16(4), 319–326. https://doi.org/10.1111/obr.12266

Pizzato, M., Martinsen, J. I., Heikkinen, S., Vignat, J., Lynge, E., Sparén, P., La Vecchia, C., Pukkala, E., & Vaccarella, S. (2022). Socioeconomic status and risk of lung cancer by histological subtype in the Nordic countries. Cancer Medicine, 11(8), 1850–1859. https://doi.org/10.1002/cam4.4548

Power, R., Ussher, J. M., Perz, J., Allison, K., & Hawkey, A. J. (2022). “Surviving discrimination by pulling together”: LGBTQI cancer patient and carer experiences of minority stress and social support. Frontiers in Oncology, 12, 918016. https://doi.org/10.3389/fonc.2022.918016

Pretty, J., Peacock, J., Sellens, M., & Griffin, M. (2005). The mental and physical health outcomes of green exercise. International Journal of Environmental Health Research, 15(5), 319–337. https://doi.org/10.1080/09603120500155963

Radley, A., & Taylor, D. (2003). Remembering one’s stay in hospital: A study in photography, recovery and forgetting. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 7(2), 129–159. https://doi.org/10.1177/1363459303007002872

Ramadurai, V., Sharf, B. F., & Ramasubramanian, S. (2016). Roads less traveled: Finding a path to using complementary and alternative medicine. Qualitative Health Research, 26(9), 1216–1228. https://doi.org/10.1177/1049732315582009

Rice, C., Riley, S., LaMarre, A., & Bailey, K. A. (2021). What a body can do: Rethinking body functionality through a feminist materialist disability lens. Body Image, 38, 95–105. https://doi.org/10.1016/j.bodyim.2021.03.014

Riley, S., Evans, A., & Robson, M. (2019). Postfeminism and health: Critical psychology and media perspectives. Routledge. https://library.oapen.org/handle/20.500.12657/77181

Riley, S., Healy-Cullen, S., Rice, C., Tiidenberg, K., Hawkey, A., Evans, A., Stephens, C., Tappin, J., Ensslin, A. & Morison, T. (2025). Problematising menstrual tracking apps: presenting a novel critical scoping review methodology for mapping and interpreting research literature. Psychology & Health, 1–25. https://doi.org/10.1080/08870446.2024.2445518

Robinson, O. E., & Henner, J. (2017). The personal is political in The Deaf Mute Howls: Deaf epistemology seeks disability justice. Disability & Society, 32(9), 1416–1436. https://doi.org/10.1080/09687599.2017.1313723

Robson, M., Riley, S., Gagen, E., & McKeogh, D. (2023). Love and lifestyle: How ‘relational healthism’ structures couples’ talk of engagement with lifestyle advice associated with a new diagnosis of coronary heart disease. Psychology & Health, 38(12), 1606–1622. https://doi.org/10.1080/08870446.2022.2033240

Robson, M., Riley, S., & McKeogh, D. (2024). Understanding the disconnect between lifestyle advice and patient engagement: A discourse analysis of how expert knowledge is constructed by patients with CHD. Psychology & Health, 1–21. https://doi.org/10.1080/08870446.2024.2390031

Roche, A.-M. (2023, March 24). The link between Big Pharma and the supplement industry. Elsevier. https://www.elsevier.com/connect/the-link-between-big-pharma-and-the-supplement-industry

Rosário, A. T., & Dias, J. C. (2023). Marketing strategies on social media platforms. International Journal of E-Business Research, 19(1), 1–25. https://doi.org/10.4018/IJEBR.316969

Schulz, P. J., Crosignani, F., & Petrocchi, S. (2023). Critical test of the beneficial consequences of lifting the ban on direct-to-consumer advertising for prescription drugs in Italy: Experimental exposure and questionnaire study. Journal of Medical Internet Research, 25, e40616. https://doi.org/10.2196/40616

Setchell, J., Abrams, T., McAdam, L. C., & Gibson, B. E. (2019). Cheer* in health care practice: What it excludes and why it matters. Qualitative Health Research, 29(13), 1890–1903. https://doi.org/10.1177/1049732319838235

Sligo, J., Jones, B., Davies, C., Egan, R., Ingham, T., Hancox, R. J., & Richards, R. (2019). The experiences of young people with chronic illness in New Zealand: A qualitative study. Child: Care, Health and Development, 45(5), 660–669. https://doi.org/10.1111/cch.12696

Stats NZ. (2024, May 29). 2023 Census population counts (by ethnic group, age, and Māori descent) and dwelling counts. https://www.stats.govt.nz/information-releases/2023-census-population-counts-by-ethnic-group-age-and-maori-descent-and-dwelling-counts/

Stramondo, J. A. (2022). A critique of the curative imperative. Surgery, 171(4), 1121–1122. https://doi.org/10.1016/j.surg.2021.10.008

Stevenson, F. A., Britten, N., Barry, C. A., Bradley, C. P., & Barber, N. (2003). Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice?. Social Science & Medicine, 57(3), 513-527.https://doi.org/10.1016/S0277-9536(02)00377-5

Stronge, P. (2013). A confusion of tenses: Health screening and time. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 17(4), 340–357. https://doi.org/10.1177/1363459312460700

Taghinejadi, N., van der Westhuizen, H.-M., Ayomoh, F. I., Ahmed, W., Greenhalgh, T., & Boylan, A.-M. (2024). Pain experiences during intrauterine device procedures: A thematic analysis of tweets. BMJ Sexual & Reproductive Health, 50(4), 271–277. https://doi.org/10.1136/bmjsrh-2023-202011

The Maintenance Phase. (2024). Doctors have a new plan for fat kids. https://maintenancephase.buzzsprout.com/1411126/episodes/12338698-doctors-have-a-new-plan-for-fat-kids

Tomiyama, A. J., Carr, D., Granberg, E. M., Major, B., Robinson, E., Sutin, A. R., & Brewis, A. (2018). How and why weight stigma drives the obesity ‘epidemic’ and harms health. BMC Medicine, 16(1), 123. https://doi.org/10.1186/s12916-018-1116-5

Tsunetsugu, Y., Park, B.-J., & Miyazaki, Y. (2010). Trends in research related to “Shinrin-yoku” (taking in the forest atmosphere or forest bathing) in Japan. Environmental Health and Preventive Medicine, 15(1), 27–37. https://doi.org/10.1007/s12199-009-0091-z

Upsdell, A., Fia’ali’i, J., Lewis, G. N., & Terry, G. (2024). Health and illness beliefs regarding pain and pain management of New Zealand resident Sāmoan community leaders: A qualitative interpretive study based on Pasifika paradigms. Health Promotion Journal of Australia, 35(3), 724–733. https://doi.org/10.1002/hpja.800

Ussher, J. M., Allison, K., Perz, J., Power, R., & Team, O. with C. S. (2022). LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness. Frontiers in Oncology, 12, 873642. https://doi.org/10.3389/fonc.2022.873642

Ussher, J. M., Allison, K., Power, R., Ryan, S., Perz, J., The Out with Cancer Study Team, Hawkey, A., Parton, C., Davies, C., Watson, L., McDonald, F. E. J., Anazodo, A., Hickey, M., Robinson, K. H., Boydell, K., Bruce, J., Rae, J., & Gilmore, T. (2023). Disrupted identities, invisibility and precarious support: A mixed methods study of LGBTQI adolescents and young adults with cancer. BMC Public Health, 23(1), 1837. https://doi.org/10.1186/s12889-023-16739-9

Ussher, J. M., Power, R., Allison, K., Sperring, S., Parton, C., Perz, J., Davies, C., Cook, T., Hawkey, A. J., Robinson, K. H., Hickey, M., Anazodo, A., & Ellis, C. (2023). Reinforcing or disrupting gender affirmation: The impact of cancer on transgender embodiment and identity. Archives of Sexual Behavior, 52(3), 901–920. https://doi.org/10.1007/s10508-023-02530-9

Van Dulmen, S., Sluijs, E., Van Dijk, L., De Ridder, D., Heerdink, R., & Bensing, J. (2007). Patient adherence to medical treatment: A review of reviews. BMC Health Services Research, 7(1), 55. https://doi.org/10.1186/1472-6963-7-55

Wilkinson, S., & Kitzinger, C. (2000). Thinking differently about thinking positive: A discursive approach to cancer patients’ talk. Social Science & Medicine, 50(6), 797–811. https://doi.org/10.1016/s0277-9536(99)00337-8

Willig, C. (2009). “Unlike a rock, a tree, a horse or an angel …”: Reflections on the struggle for meaning through writing during the process of cancer diagnosis. Journal of Health Psychology, 14(2), 181–189. https://doi.org/10.1177/1359105308100202

Winkler, M. (2022). Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice. Journal of Parenteral and Enteral Nutrition, 46(8), 1751–1760. https://doi.org/10.1002/jpen.2433

Withey-Rila, C., Morgaine, K. C., & Treharne, G. J. (2024). Understanding the context of positive experiences of primary care for transgender and gender diverse adults: An email interview study in Aotearoa New Zealand. International Journal of Transgender Health, 25(4), 704–718. https://doi.org/10.1080/26895269.2023.2234899

World Health Organization. (2003). Adherence to long-term therapies: Evidence for action. World Health Organization. https://iris.who.int/handle/10665/42682

Xie, Z., Zhang, K. Z., Thein, H., Kataoka, M., & McLean, R. (2022). “We are Asian people, you know”: Perspectives and experiences of New Zealand Asian in-centre haemodialysis patients. Renal Society of Australasia Journal, 18(2), 62–67. https://doi.org/10.33235/rsaj.18.2.62-67

Yeabsley, J. K. (2024). Picky eating and positive outcomes from healthcare interactions: A narrative analysis of interviews with parents identifying pathways to progress. [Masters, Massey University]. https://mro.massey.ac.nz/handle/10179/69971

See Garland Thompson (2011) for further discussion of how fitting and misfitting in social and physical spaces can “materialise identity” (p. 601). ↵
We use the term fat to avoid the medicalised stigmatising connotations of the term “obesity” and as an attempt to use it as a neutral description of bodily variation. As Calogero et al. (2019, p. 23) explain “We use fat to describe a person, much as we would use tall, short, and thin… if we shun the use of the word fat, we validate and perpetuate the stigma this term evokes”. ↵
Upsdell et al’s. (2024) study is also important for exploring symptom interpretation, which we cover in Morison and Gibson Chapter 2.2. It also illustrates how health policies that claim to serve “all” can reinforce systemic health inequities for Indigenous peoples; resulting in the attribution of persistent ethnic health disparities to individual factors or characteristics of ethnic groups (also the Penney et al. (2011) textbox). In Aotearoa New Zealand, such research, along with governmental reviews of health services, highlights the need for systemic change, including integrating equity and anti-racism within the health sector (Came et al., 2020, 2021). ↵
Despite the fact that, (1) smoking is related to social economic status and thus social inequities (see, for example, Pizzato et al., 2022); (2) many people diagnosed with lung cancer are not smokers (CDC, 2024); (3) health risk information is not a sufficient tool for behaviour change in general, including stopping some people from smoking (Heikkinen et al., 2010; also see our critique of socio-cognitive models of health behaviour in Riley et al. Chapter 1.2); and (4) we all make mistakes. Thus, adding social stigma to the experience of a diagnosis of lung cancer, regardless of smoker status, is highly problematic. ↵
Reviewing a range of literature associated with positive psychology, Aspinwall and Tedeschi (2010) describe multiple pathways for how a positive mindset might enhance treatment outcomes. However, they also highlight that the strength of this relationship varies and that the protective benefits of positive thinking and feeling vary by disease, and in relation to mortality, can have weaker or non-significant protective benefits. They raise concerns about assuming positivity is always good, such as when patient attempts to recognise their adversity is read by their healthcare providers as them failing to be positive. ↵
For example, the way having a lift/elevator in an underground train station affects the possibilities for travel for disabled travellers. ↵
Another key design intention is monetary, since many of these are developed commercially. ↵
To give you a sense of this, the Global Wellness Institute estimates the global wellness at US$6.3 trillion with forecasts to reach US$9 trillion by 2028 (Global Wellness Institute, 2024). ↵

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Critical Health Psychology: Foundations, Approaches and Applications Copyright © 2025 by the authors is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, except where otherwise noted.