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The purpose of this chapter is to use sociological theory and research to develop an explanation for how chronic illnesses are managed at home and to thereby suggest some ways in which a sociological perspective can be applied to improve health care for persons with chronic illnesses. Self-care illness management is crucial to the prevention of and reduction of morbidity and mortality from chronic illness.

Review and synthesis of research literature.

Sociological research and theory suggest two important insights that should inform health care services aimed at improving self-care; chronic illness care occurs in the context of the household, neighborhood, and community and, therefore, the “patient” (i.e., the object of health services) is really the caregiving social network around the patient, and because the risk of chronic illness and the resources available to deal with it are socially (and unequally) distributed, “health care” interventions need to take account of disparities in risks and resources that will affect the patient’s ability to successfully comply with self-care regimens.

The review does not include an examination of the clinical research literature. It does, however, suggest that sociologists need to explicitly study chronic illness and health care related to it.

The chapter links the long history of research on family caregiving to the concern with the success of self-management of chronic illness. It also links concerns about that success to social disparities in the distribution of social resources and hence to morbidity and mortality disparities.

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.

Objective. To evaluate a health and fitness programme conducted within a New South Wales, Australia correctional facility for male inmates with a chronic illness. Design. A randomised control trial. Sample. Twenty male inmate participants with a chronic illness, two risk factors for developing a chronic illness or who were over the age of 40 years. Measurements. Pre and post programme health assessments that included resting blood pressure and heart rate, weight, body mass index, waist girth, peak flow measures, peripheral saturation of oxygen, blood glucose levels and 6 minute walk test. Intervention. A 12‐week structured exercise programme focusing on cardio respiratory endurance, strength and flexibility training. Results. Statistically significant improvements in resting heart rate and endurance were found. Conclusions. The health and fitness programme positively impacts on the health of inmates with a chronic illness. A further study with a larger sample size would be productive.

Social networks have been a central focus of sociological research on inequalities but less has focused specifically on chronic illness and disability despite a policy emphasis on resources necessary to support self-management. In this chapter, we seek to unpack overlaps and distinctions between social network approaches and research on the experience and management of chronic illness. We outline four main areas viewed as central in articulating the potential for future work consistent with a critical realist perspective: (1) body–society connections and realist/relativist tensions; (2) the controversy of ‘variables’ and accounting for social and cultural context in studying networks for chronic illness support; (3) conceptualising social support, network ties and the significance of organizations and technology; and (4) translating theory into method.

The purpose of this paper is to consider mental health issues in children and adolescents with chronic illness or health conditions, including their treatment, and issues related to delivery of services.

A selective review of the literature was conducted to highlight significant mental health issues and their treatment in youth with various types of chronic illness.

A significant portion of youth experience mental health problems related to their chronic health conditions. While evidence-based treatments are available to address these problems, significant barriers exist that impede the delivery of psychological and behavioral interventions for many youth.

More controlled studies are needed to demonstrate the effectiveness and cost offset of delivering psychological and behavioral interventions for the population of youth with various types of chronic health conditions, particularly in clinical and community settings.

Policy reform can ensure that mental health issues are effectively addressed for children with chronic illness. Policy is needed that promotes integrated health care, whereby psychological and behavioral interventions are delivered in health care settings along with medical interventions to reduce barriers to care.

Significant numbers of children and adolescents have chronic health conditions and many experience mental health problems related to their conditions. While evidence-based treatments are available to address these problems, significant barriers impede the delivery of psychological and behavioral interventions for many youth. Health care policy promoting integrated health care to deliver psychological and behavioral interventions in health care settings along with medical interventions should reduce barriers to care and improve both physical and mental health outcomes for youth.

The purpose of this paper is to unpack the tenuous relationship between medical sociology and disability studies, particularly as it relates to the work of Irving Zola.

Many attribute the division between these disciplines to their starkly different and oft competing approaches to disability; however, I argue that a closer examination reveals a number of commonalities between the two.

I use Irving K. Zola’s extensive body of scholarship to demonstrate the connections between these divergent approaches to disability, and imagine what his legacy has to offer to the advancement of a diverse sociology of disability.

Neither focus is more correct than the other, as considering these bodies of work together presents a number of opportunities to advance a more comprehensive sociological theory – not just of disability – but of ableism and its intersections with other forms of oppression as well.

Through the use of digital methods, representation of peoples’ self-perception of experiences becomes possible. Digital imagery presents opportunities to expand the way it is possible to convey the diverse information gathered in the field. To enable some of the communication of various unseen experiences of the chronic illnesses Chronic Fatigue Syndrome and Fibromyalgia, I created, what I have called, hypertextual self-scape digital photographs through collaboration with participants which use a layering of information gathered in the field, including both seen and unseen experiences to create sensory embodied dialogue about the lifeworld. I will expand on this in greater detail as we continue, but briefly this means the use of art forms being used as a way to gather information and then using digital techniques to communicate the self-talk of lived experience. Images have the potential to expand our access to peoples’ lifeworld and I will take this further in the chapter to look at how altering an image increases the information that can be communicated. Just as the bodies of my participants do not reveal the truth about their experiences, the objects chosen do not tell the whole story about what they really represent. As a part of this discourse I will show how digital technologies have the potential to expand representations of experience. Imagery is another way to “write up” information gathered during the research and by embracing images and symbols through our method and our writing up of the research expands on the information which can be gathered and later communicated about participants’ lifeworld. The images I am using here act “not as observational and objectifying tools, but as routes to multisensorial knowing” (Pink, 2010, p. 99) and expand on the existing representations of chronic illness in the literature. We also view and interpret images in a different way to text, as I believe images offer a potential to engage in dialogue with the body in sensory discourse. Therefore, the purpose of this chapter is to advocate the use of digital technologies alongside research methodologies when looking at hidden experience and interiorities (Hogan & Pink, 2010; Irving, 2013).

While web logs often are taken to be “Internet diaries,” unlike diaries that are private and serve only the needs of their authors, public blogs serve as a technological tool, allowing for the formation of Internet communities and challenges to institutional and/or cultural narratives.

I analyzed narratives constructed in two years of blog posts for each of five individuals with Chronic Fatigue Syndrome (CFS). I sought to understand the relationship between personal stories of contested illness and broader illness narratives.

My findings suggest these personal illness stories operate within the artificial confines of the dominant models of a given society. Blogs are used not only as a chronicle of day-to-day happenings, but as a means of engaging with traditional illness narratives, challenging cultural narratives about CFS, and of resisting institutional narratives concerning the illness process.

This study brings voices of people with contested illnesses into the discourse on disability, where their perspectives have historically been poorly represented. The study also suggests that blogs can become sites of resistance and social change by providing a space in which counternarratives can be constructed and circulated.

The reopening of schools during the SARS-CoV-2 pandemic is full of challenges for families, which are heightened for children and young people (CYP) who live with chronic illnesses. This paper aims to offer a framework to support the successful return of CYP with chronic illnesses to school using appropriate intersectoral strategies.

This paper draws on research data on the impact of school closure on CYP with chronic illness and emerging findings of global research about their lives during the pandemic. It is also informed by the perspectives of practitioners in the field, who are working with these CYP and their families.

A framework based on three different strategies for a successful return is established. A small but significant group of CYP living with conditions such as cancer will not yet return and will need ongoing home education provision. CYP with well-controlled symptoms of chronic illness will benefit from school routines and socialization with peers. CYP with poorly controlled illness will need close supervision and individual plans. All groups will benefit from better intersectoral working across education and health and from recent rapid developments in hybrid learning models and telemedicine.

This viewpoint highlights the need for a strategic approach to the return to school of CYP with chronic illness that goes well beyond classifying them as vulnerable students. This group of CYP is already at risk of lower educational attainment, so widening inequalities must be halted. This paper provides a framework for anchoring local intersectoral approaches adapted to the different situations of CYP.

The chapter revisits the concept of social stigma viewed from the perspective of mental patients integrated in the community based on the example of Geel, Belgium that historically utilized a family care model for a significant number of patients with severe mental illness.

Interpretive analysis of data presented in ethnographies on the Geel colony by Roosens (1979) and Roosens and Van de Walle (2007), showcasing 30 patients’ case studies in addition to research-based author narratives.

This study demonstrates that chronic mental patients tend to reject the sick role and the stigma associated with it by trying to influence their social image and how their status is being defined in the community. They appear to be active managers, not passive recipients of societal attitudes, and, furthermore, functional members of the community. By forgoing exemption from social roles carried by their significant impairment, mental patients continue to be contributing members of their host families, and in some cases develop into caregivers themselves completing the circle of role reversal.

The current analysis utilizes secondary data and therefore is restricted by the information included in the primary research.

The findings allow us to develop a deeper understanding of the social status chronic mental patients acquire in the community, and how it is influenced by the dynamics of social stigmatization and remedial work these social actors are compelled to perform. Additionally, the study contributes to the inclusion of the chronic patients’ perspective in research.