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Purpose – To provide an overview of racial/ethnic disparities in human papillomavirus (HPV) infection, HPV vaccination, and cervical cancer on domestic and international levels.

Design/methodology/approach – The literature, cervical cancer prevention guidelines, and Centers for Disease Control and Prevention resources were culled to aggregate information on epidemiology, racial/ethnic disparities, and knowledge and attitudes related to HPV, HPV vaccination, and cervical cancer. Original data supplement information about HPV and HPV vaccination knowledge and attitudes.

Findings – Cervical cancer is among the leading causes of female death worldwide, with substantial racial/ethnic and geographic disparities. In the United States, African American and Hispanic women suffer disproportionate cervical cancer incidence and mortality compared to their Caucasian counterparts. Globally, the greatest burden of cervical cancer (and HPV infection) is shouldered by developing regions. Prevention efforts, such as HPV vaccination and adaption of screening programs to resource-poor areas, have the potential to reduce such disparities, but cultural context is critical to successful development and implementation of such interventions.

Research limitations/implications – As this is not a systematic review, but rather a viewpoint on issues related to disparities in cervical cancer, the literature review is not exhaustive.

Practical implications – This chapter provides a context for examining cervical cancer disparities domestically and globally and serves as a starting point for formulating future research.

Originality – This perspective on HPV and cervical cancer presents disparities both within the United States and worldwide. The chapter supplements the literature with new data that provide additional insight into knowledge and attitudes about these health issues.

This chapter discusses challenges faced by older adult health-care consumers in obtaining access to responsive care from physicians relevant to a broad spectrum of health issues ranging from prevention to chronic illness and end-of-life care. Based on our prior research with community-dwelling elders (E. Kahana & B. Kahana, 2003, 2010), we propose a conceptual model of consumer self-advocacy for better access to effective health care in late life. We argue that older adults who are well informed and confident health-care partners and who involve their physicians in active dialogue will experience better care, and will be more satisfied with their health care. We present findings from our studies of cancer prevention and from our research focused on end-of-life care relevant to patient self-advocacy. We also discuss the role of educational interventions and of patient empowerment in facilitating greater access to responsive health communication and health care, particularly among elders who are disadvantaged and who have low health literacy.

Purpose: We respond to a call for studies of “embodied experiences of stigma in context” by investigating how transgender embodiment shapes perceived needs for access to and experiences of “sex-specific” cancer screenings (SSCS) (e.g., breast and prostate exams, Pap smears) in the North American healthcare system.

Design/Methodology/Approach: We analyze data from semistructured interviews with a diverse sample of 35 transgender-identified adults. Based on thematic narrative analysis, we explore four themes in relation to embodiment: discrimination; discomfort and hyperawareness of genitalia; strategic reframing and active management; and SSCS health care encounters as positive and gender affirming.

Findings: In relation to SSCS, transgender individuals experience discrimination, do emotion work, and actively manage situations to obtain needed health care, and sometimes forego care because barriers are insurmountable. Health care providers' responses to transgender embodiment can disrupt health care encounters, but they can also facilitate access and create opportunities for affirmation, agency, advocacy, and new forms of interaction. Embodiment- and gender-affirming interactions with health care providers, which varied by gender, emerged as key influences on participants' experiences of SSCS.

Research Limitations/Implications: Our sample primarily includes binary gender-identified individuals, and while our interview guide covered many topics, the SSCS question did not explicitly reference testicular exams.

Practical Implications: Cancer prevention and detection Cancer prevention and detection require health care professionals who are prepared for differently embodied persons. Preventive cancer screenings are not “sex-specific”; they are relevant to individuals with medically necessary needs regardless of gender identity or embodiment.

Social Implications

Originality/Value: Few medical sociologists have focused on transgender embodiment. Findings enhance our understanding of how transgender embodiment and minority stress processes influence access to needed SSCS.

To measure adolescent girls’ preferences over features of human papillomavirus (HPV) vaccines in order to provide quantitative estimates of the perceived benefits of vaccination and potential vaccine uptake.

A discrete choice experiment (DCE) survey was developed to measure adolescent girls’ preferences over features of HPV vaccines. The survey was fielded to a U.S. sample of 307 girls aged 13–17 years who had not yet received an HPV vaccine in June 2008.

In a latent class logit model, two distinct groups were identified – one with strong preferences against vaccination which largely did not differentiate between vaccine features, and another that was receptive to vaccination and had well-defined preferences over vaccine features. Based on the mean estimates over the entire sample, we estimate that girls’ valuation of bivalent and quadrivalent HPV vaccines ranged between $400 and $460 in 2008, measured as willingness-to-pay (WTP). The additional value of genital warts protection was $145, although cervical cancer efficacy was the most preferred feature. We estimate maximum uptake of 54–65%, close to the 53% reported for one dose in 2011 surveillance data, but higher than the 35% for three doses in surveillance data.

We conclude that adolescent girls do form clear opinions and some place significant value on HPV vaccination, making research on their preferences vital to understanding the determinants of HPV vaccine demand.

DCE studies may be used to design more effective vaccine-promotion programs and for reassessing public health recommendations and guidelines as new vaccines are made available.

This chapter summarises the role of EU actions in supporting healthcare policies in the EU Member States, both looking at implemented actions and describing current priorities for the future. It argues that these coordinated actions can be beneficial for EU Member States by helping them to avoid duplication of effort and to attain economies of scale. Moreover, data sharing with proper safeguards can unleash vast amount of ‘learning what works’ both for medical treatments and for healthcare sustainability measures. The need for this common learning appears ever more urgent while facing the health and economic consequences of the present pandemic.

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.

This chapter presents a framework for an action research based intervention to develop and transform sustainable healthcare in a regional context. The framework is illustrated by the case of the Regional Cancer Centre (RCC) West in western Sweden.

The framework draws upon and develops Pettigrew’s context–content–process model of strategic change and applies it to the unfolding narrative of the change effort. The empirical focus is the activities of a learning platform consisting of the RCC leadership, senior cancer physicians designated as process owners and an action research team. Data were collected from documents, observations of the learning platform, notes from meetings and interviews. Outcome data were obtained via the self-reporting of the physicians.

The learning platform established the capability for wide ranging development and quality improvement on the 23 cancer pathways as well as some support activities around principles of patient-centred care. A clear result is greater inter-organisational collaboration between care professionals as well as the introduction of new medicines, clinical methods, joint learning activities and new forms of measurement and monitoring of care practices. All of the improved measures are sustained.

Whilst there is no shortage of rhetoric on patient-centred care, the reality is that in complex healthcare systems solutions such as process-oriented approaches often fail. This case presents a model and an approach that eschews clear visions for change and instead places an emphasis on dialogue, participation, professional autonomy and collaborative communities as means for achieving the patient-centred ideal. The case also shows the value of seeing sustainable health systems as being grounded on practitioner–scholar collaboration that combines practical knowing with scientific knowledge.

Nutrition, as a science, is poorly understood, both professionally and publicly. The confusion that surrounds this science makes it very difficult, if not impossible, to formulate public health policy, which creates opportunities for political manipulation and control. Nutrition, for a century or more, has been variously described as a summation of the physiological and biochemical properties of individual nutrients in food rather than the whole food itself. This infers that isolated nutrients in supplements will function in the same way as nutrients in food. It also infers that removing or minimizing “undesirable” nutrients from food will make the food more healthful. This arises from the highly reductionist way that we focus on individual nutrients minus their natural context, both the context within the foods of which they are a part and the context within biological systems where they function. The shortcomings of this belief system may be illustrated by hugely costly mistakes made in the past, even more than a century ago, that corrupt current practices. Such mistakes have become so embedded in the contemporary narrative on nutritional science, both fundamentally and practically, that we fail to recognize the damage they continue to cause.

Alternatively, when nutritional effects are considered more within their natural contexts, that is, more wholistically, then it helps to explain, for example, the remarkable ability of nutrition, as provided by a whole food plant-based diet, to prevent even to cure varied types of cardiovascular disease. Furthermore, the breadth of this nutritional effect for a wide variety of illnesses and diseases suggests that nutrition, properly provided by a whole food plant-based diet, is more efficacious than a combination of all the contemporary pills and procedures combined. It also suggests that genetic determinism is not the explanation for disease that is widely advanced. And finally, among still more consequences, there are many societal outcomes that can be substantially mitigated, including the escalating cost of health care and the dangerously increasing array of destructive practices that damage the environment. Many of the momentous health, economic, environmental and sociopolitical problems currently faced may be traced to a misunderstanding of the effects of food and nutrition. The task therefore is how to bring this message to the attention of a public who for too long have gradually adopted flawed food production and healthcare systems that are on the verge of collapse, threatening the collapse of entire societies as we know them. More specifically, a public and professional dialog on the meaning of nutrition, especially its wholistic properties, is desperately needed, especially in medical schools where nutrition as a science is almost totally ignored.

Purpose – The purpose of this chapter is to explore whether and how social tagging can be useful in an information web site for cancer patients and their relatives.

Methodology/approach – Three studies have been carried out in order to investigate the research questions. First, we reviewed and analyzed literature about cancer patients’ information needs and seeking behavior, and about social tagging and patient terminology. Second, we analyzed tags applied to blog postings at Blogomkraeft.dk, a blog site at the Danish information web site Cancer.dk. The tags were compared with the formal browsing structure of Cancer.dk. Results from the two studies were used to develop a prototype for social tagging at Cancer.dk. Thus third, we evaluated the prototype in a usability study.

Findings – We found that tags have the potential to describe and provide access to web site content from the users’ perspective and language use. Social tags may be a means to bridge between scientific viewpoints and terminology and everyday problems and vocabulary. Tags at Blogomkraeft.dk are mainly factual, often detailed, and do not cover as many functions as tags in more general bookmarking systems. An important finding is that some tags seemed to add to and supplement the content instead of factually describing the content of a blog posting. The usability test showed that our test persons liked the tagging feature.

Social implications – Tagging features give the public an opportunity to apply their own terms to documents, reflecting their own model of the current topic. Tags may furthermore function as colloquial lead-in terms from users’ search formulations at search engines such as Google to the domain-specific, tailored cancer web site.

Originality/value – Unlike most research on social tagging so far, we investigate tagging in a domain-specific setting, how tags can improve the interaction and communication between layman users and domain experts in an information web site within health care.