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We are currently experiencing, in western societies, a new reality in health systems, the emergence of an epidemic of chronic diseases, which test and raise new challenges to the health systems. This exponential increase in chronic diseases has not been accompanied by updated training of health professionals in this area. The chronic illness implies a bilateral relationship, of commitment and compromise for life, in which the involvement of the sick person must be the rule. The scope of therapeutic education (TE) is making the person autonomous and helping them to maintain or improve their quality of life. To treat patients with chronic disease, health professionals need to adapt their knowledge to their new role in the therapeutic relationship. As for the methodology, a participative observational methodology will be carried out with the training of health professionals who work in this area. It is a descriptive work based on studies and works published by the main schools working in this area, with emphasis on the School of Geneve. The purpose is to identify the problem of chronic diseases, the challenges that patients and health professionals face and how to build educational projects, exploring the use of educational tools, including digital technology.

In the context of US kidney disease care in 2020, this chapter highlights challenges of managing COVID-19–related acute pathology, sustaining safe chronic dialysis treatment for individuals with kidney failure during a pandemic, and identifying ways to effectively address intersections of race/ethnicity, SES, and health.

Medical literature and American Society of Nephrology (ASN) online member forum review, and Emory School of Medicine Renal Grand Rounds participant observation: April 2020–March 2021.

Among persons infected with COVID-19, especially persons of African descent, acute kidney injury (AKI) risk was elevated and associated with need for long-term dialysis. Dialysis-dependent chronic kidney disease patients constituted a high-risk group for COVID-19 infection and hospitalization, due to underlying chronic conditions as well as required travel to clinics for multiple weekly dialysis treatments with exposure to possibly infected staff and other patients.

Findings that are discussed are based on a limited time frame. The longer-term impact of COVID-19 for patient outcomes and for the structure of kidney disease care is a fertile area for continued study, especially in relation to broad health equity goals.

Racial justice activism in 2020 highlighted the imperative to address socioeconomic and racially structured inequities in the United States, and health equity goals and strategies that target kidney disease care have been outlined. The acute/chronic continuum of kidney disease care is a fertile area for research that is informed by the COVID-19 experience and population health inequity challenges.

Epidemiology is often described as “the basic science of public health” (Savitz, Poole & Miller, 1999; Syme & Yen, 2000). This description suggests both a close association with public health practice, and the separation of “pure” scientific knowledge from its application in the messy social world. Although the attainability of absolute objectivity is rarely claimed, epidemiologists are routinely encouraged to “persist in their efforts to substitute evidence for faith in scientific reasoning” (Stolley, 1985, p. 38) and reminded that “public health decision makers gain little from impassioned scholars who go beyond advancing and explaining the science to promoting a specific public health agenda” (Savitz et al., 1999, p. 1160). Epidemiology produces authoritative data that are transformed into evidence which informs public health. Those data are authoritative because epidemiology is regarded as a neutral scientific enterprise. Because its claims are grounded in science, epidemiological knowledge is deemed to have “a special technical status and hence is not contestable in the same way as are say, religion or ethics” (Lock, 1988, p. 6). Despite the veneer of universality afforded by its scientific pedigree, epidemiology is not a static or monolithic discipline. Epidemiological truth claims are embodied in several shifting paradigms that span the life of the discipline. Public health knowledges and practices, competing claims internal and external to epidemiology, and structural conditions (such as current political economies, material technologies, and institutions) provide important contexts in which certain kinds of epidemiological knowledge are more likely to emerge.

This study examines chronic illness, disability and social inequality within an exposure-vulnerabilities theoretical framework.

Using the National Survey of Drug Use and Health (NSDUH), a preeminent source of national behavioral health estimates of chronic medical illness, stress and disability, for selected sample years 2005–2014, we construct and analyze two foundational hypotheses underlying the exposure-vulnerabilities model: (1) greater exposure to stressors (i.e., chronic medical illness) among racial/ethnic minority populations yields higher levels of serious psychological distress, which in turn increases the likelihood of medical disability; (2) greater vulnerability among minority populations to stressors such as chronic medical illness exacerbates the impact of these conditions on mental health as well as the impact of mental health on medical disability.

Results of our analyses provided mixed support for the vulnerability (moderator) hypothesis, but not for the exposure (mediation) hypothesis. In the exposure models, while Blacks were more likely than Whites to have a long-term disability, the pathway to disability through chronic illness and serious psychological distress did not emerge. Rather, Whites were more likely than Blacks and Latinx to have a chronic illness and to have experienced severe psychological distress (both of which themselves were related to disability). In the vulnerability models, both Blacks and Latinx with chronic medical illness were more likely than Whites to experience serious psychological distress, although Whites with serious psychological distress were more likely than these groups to have a long-term disability.

Several possibilities for understanding the failure to uncover an exposure dynamic in the model turn on the potential intersectional effects of age and gender, as well as several other covariates that seem to confound the linkages in the model (e.g., issues of stigma, social support, education).

This study (1) extends the racial/ethnic disparities in exposure-vulnerability framework by including factors measuring chronic medical illness and disability which: (2) explicitly test exposure and vulnerability hypotheses in minority populations; (3) develop and test the causal linkages in the hypothesized processes, based on innovations in general structural equation models, and lastly; (4) use national population estimates of these conditions which are rarely, if ever, investigated in this kind of causal framework.

Late nephrology referral, a problem currently identified across many high income countries, has been associated with reduced opportunities for delaying or halting the progression of chronic kidney disease (CKD), delayed dialysis initiation, reduced choice in treatment modality, increased morbidity and hospitalization, and premature death. Despite a recent finding that the progression of CKD nearly always presents warning signs, and despite the fact that all Canadians are entitled to receive medically necessary health care free at the point of patient entry, each year in the province of British Columbia (BC) a substantial number of people with CKD experience late or no referral to nephrology care prior to requiring renal replacement therapy. A subset of these CKD patients experience no referral and “crash” onto dialysis (experience an acute or emergent start). Existing research has not fully explored the range of potential health determinants that may affect the timing of nephrology referral. This paper adopts a “determinants of health” framework and assesses the impact of a variety of indicators on patients’ physical health, demographics, socioeconomic status, social support, geographic and health system characteristics. Using a late referral definition of <3 months and data on BC patients who began dialysis between April 2000 and March 2003, multiple regression analysis indicates that the following determinants have an independent effect on the timing of referral: cause of end-stage renal disease (p=<0.0001); age (p=<0.0001); race/ethnicity (p=0.0019); English ability (p=0.0158); marital status (p=0.0202); proximity to care (p=0.0118); and, “age by first language” (p=0.0244).

People with chronic conditions faced a type of double jeopardy during the COVID-19 pandemic. Their pre-existing health conditions made them more likely to become severely ill – and more likely to be admitted to intensive care, intubated, and die – if infected with SARS-CoV-2, the virus that causes COVID-19. At the same time, access to needed screening, testing, and treatment was often limited due to the cancelation of primary care services by healthcare providers and systems overwhelmed by the need to treat patients with COVID-19. Patients with chronic conditions feared being exposed to COVID-19 while receiving care. The resulting stress, fear, and anxiety made the management of chronic diseases even more difficult. Several subsets of patients with certain medical conditions, including immunodeficiencies and disabilities, were particularly impacted. The COVID-19 pandemic, and the response to it, also impacted support and services available to caregivers and heightened stress, particularly among parents and caregivers.

Researchers have spent considerable time studying how racial-ethnic minorities experience poorer health than whites [Townsend, P., & Davidson, N. (Eds). (1990). Inequalities in health: The black report. England: Penguin Press; Platt, L. (2006). Assessing the impact of illness, caring and ethnicity on social activity. STICERD Research Paper No. CASE108 London England), and how low socioeconomic status (SES) can negatively influence health status (Lynch, J., & Kaplan, G. (2000). Socioeconomic position. In: L. F. Berkman & I. Kawachi (Eds), Social epidemiology (pp. 13–55). New York: Oxford University Press]. This research investigates the relationship between class and race and perceived health status among patients with chronic conditions. More specifically, we apply the concept of social capital to assess whether the quantity of health information seeking behaviors (HISB) via social networks mediates the relationship between race and health status, and between SES and health status. Regression, t-test and ANOVA analyses of 305 surveys completed at a chronic illness management clinic in a Northwest research hospital reveal three important findings: first, that social class affects perceived health status more strongly than race; second, that frequency and amount of HISB do not play a significant role in perceived health status, regardless of race or SES; and third, that an interaction effect between frequency and amount of HISB suggests that the way that patients seek health information, and the quality of that information, may be more useful indicators of the role of social capital in HISB than our study can provide.

Purpose – The chapter examines the historical pattern of interconnections between drug policy, research, and treatment in light of recent theoretical developments in the medicalization thesis advanced in the sociology of medicine.

Methodology/approach – The chapter uses interpretive methods to examine how the social construction of addiction as a “chronic, relapsing brain disorder” converges with or diverges from the conceptual framework offered by sociological theorists of medicalization and biomedicalization.

Findings – The approach adopted shows how the meanings of the bio/medicalization of addiction shifted and circulated within and beyond the institutions developed to respond to drug addiction as a hybrid social, medical, and biomedical condition during the 20th century.

Social implications – Bio/medical frameworks for addiction are the outcome of historical attempts to influence public attitudes and develop effective methods to treat and prevent this “disease” in ways that would positively affect the quality of life of people living with addictions.

Originality/value – This original contribution addresses both strengths and limitations of bio/medical models, assessing how their influence has changed over time.

Chronic illnesses often go unnoticed mainly due to their invisibility and lack of understanding both at home and in the workplace. In this chapter, I use an autoethnographic approach to engage with my “emotionally charged” lived experiences of living and working with a stigmatized chronic illness – irritable bowel syndrome (IBS) – in a highly patriarchal Pashtun society where women are expected to perform various social roles despite of illness and are often silenced to male domination. IBS is a functional gastrointestinal disorder characterized by abdominal pain, abnormal bowel function, and bloating, in the absence of any structural abnormalities, and has a significant impact on one’s life. As I navigate through my experiences of suffering from a chronic illness and the emotional labor involved therein, I shed light on the challenges I face as a woman in managing work and life and as I silence my pain and emotions to fit into the roles of a “professional” academic, a “good” wife, a “good” daughter, a “good” sister-in-law, a “good” daughter-in-law, and so forth. I have used both the lens of stigma to reflect my sufferings and normalization to demonstrate my resilience and (re)adjustment to the new life. In doing so, pain and emotions do leak out during intense situations but silencing chronic illness is mostly strategic as it protects us from being excluded, marginalized, and stigmatzed both at work and home.

The purpose of this study was to survey parents who have Multiple Sclerosis (MS) and examine issues surrounding their parenting.

Qualitative surveys were used to collect data.

Findings from the study include three themes: (a) They needed to know; (b) Involving children with treatment; and (c) I can’t do this alone. Discussion of findings and conclusions and recommendations for parents, physicians, and future studies are presented.

Data for the study was collected through self-reports and limited demographic data was collected.

Continued research on MS is needed, especially in the area involving children in at-home treatments and children as caregivers. Children can be a challenging population to investigate, yet as evidenced in this study, children are being involved in MS treatments of their parents. A greater, more in-depth look at the role of a child as caregiver is warranted.