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Slippery slope argumentation features prominently in debates over assisted suicide. The jurisdiction of Oregon features prominently too, especially as regards parliamentary scrutiny of assisted suicide proposals. This paper examines Oregon's public data (including certain official pronouncements) on assisted suicide in light of the two basic versions of the slippery slope argument, the empirical and moral-logical versions. Oregon's data evidences some normatively interesting shifts in its assisted suicide practice which in turn prompts consideration of two elements of moral-logical slippage that are not widely discussed. One is slippage from an initial autonomy-based public justification for assisted suicide which does not include burden-based concerns within its operative account of voluntariness to an evolved public justification that does. The other is an expansion of a terminal illness ground to include chronic illnesses effectively rendered terminal via a refusal of treatment. [ABSTRACT FROM AUTHOR]

This review tested the use of psychological theories for predicting seasonal influenza vaccination behaviour among adults with a health condition (for which the vaccine is clinically indicated). Ovid (1946–August 2018), Embase (1974–August 2018), CINAHL (1958–August 2018) and PSYCInfo (1986–August 2018) databases were searched. Studies drawing upon a psychosocial or psychological theory to explain seasonal influenza vaccination behaviour among adults with a high-risk health condition were eligible for inclusion. Papers were systematically extracted by title, abstract and full text. Quantitative and qualitative studies were included, and all papers were quality assessed. A total of 4840 papers were identified after removal of duplicates. Twelve papers were retained in the narrative synthesis. Studies were conducted across a range of high-risk condition populations and most (83.3%) were cross-sectional. The Health Belief Model (HBM), the model of Psychological Flexibility, The Health Action Process Approach and House's Framework of Social Support were applied. Ten out of 12 papers (83.3%) drew on the HBM. There was evidence of an association between HBM perceived benefits, perceived barriers and vaccination behaviour, although there were inconsistencies across studies. This review highlighted the need for further research, particularly prospective studies of high methodological quality. [ABSTRACT FROM AUTHOR]

Advances in detection and treatment mean that over 50% of people diagnosed with colorectal cancer can expect to live for more than ten years following treatment. Studies show that colorectal cancer patients can experience numerous physical and psychological late effects. The aim of this study was to conduct a systematic review and qualitative synthesis on the experiences of living with colorectal cancer as a chronic illness. Electronic searches of online databases were undertaken of peer reviewed and grey literature. Forty-seven papers were eligible for inclusion in the review, capturing the experiences of over 700 participants, the findings from which were analysed using thematic synthesis. Three higher order concepts were identified which were prevalent across studies and countries and which related to the supportive care needs of patients; common physical and psychological late effects of cancer; and methods of psychosocial adjustment to living with and beyond colorectal cancer. The results are considered in the context of existing theoretical approaches to chronic illness and the need to develop a theoretical approach which fully encapsulates the experience of living with colorectal cancer as a chronic illness in order to inform interventions to support patient adjustment. [ABSTRACT FROM AUTHOR]

This paper examines the affective inequalities underpinning the extensive responsibilities of care that are shouldered by chronically ill middle-aged British Pakistani women. In the context of ethnic health inequalities, chronic illness and premature ageing are ubiquitous. Further, mid-life generates gendered pinchpoints in the dynamics of care. The paper draws on extended conversations with women over seven/eight years and tracks their unsettled perspectives on sabar (patient endurance). Middle-aged women described how, over the long haul of living alongside chronic illness, they intuited that they must place some limits on caring for others, and that care required self-care - not in a biomedical sense, but in the sense of attention to their own bodily and relational needs. The paper extends anthropological critiques of Levinas's philosophy of infinite responsibilities to care, tracking how changes at several temporal scales - the life course, intergenerational re-negotiations - affect care. While social transformations of gender, and the proliferation of neoliberal discourses on self-care do affect the traction of normative notions of selfless care for others, the paper locates women's changing perspectives on sabar primarily in the provocations of everyday life. [ABSTRACT FROM AUTHOR]

As Jungian analysts, we rarely discuss our medical conditions, especially chronic illness and disability and their effects on our work and lives. The sense of being judged by our colleagues and being forced to give up our practices by prevailing cultural and societal norms can create fear and apprehension in a disabled analyst, who may not feel able to discuss the depths that can also emerge from serious physical conditions. These apprehensions may also be connected to the overused and often misused concept of psychosomatic illness, a reductive and causal approach that may stifle a more creative experience emerging from illness and disability. C. A. Meier brings a different understanding and approach to the links between soma and psyche, connecting the two at the psychoid level, where synchronistic experiences may emerge. Furthermore, through the myth of Inanna's journey to the death world of Ereshkigal, this paper includes a personal account of illness and disability, connecting it to a wider conversation concerning the Jungian approach to ourselves as analysts, to our colleagues, and to our clients. [ABSTRACT FROM AUTHOR]

The use of person-first language (i.e., the person with a disability) versus identity-first language (i.e., the disabled person) is a source of ongoing debate. Proponents of person-first language argue for its use, so as not to objectify or stereotype a person by their illness or disability. Conversely, advocates of identity-first language state that it affirms pride in the person's disability. Overall, however, there is a growing use of identity-first language. Both proponents of person-first and identity-first language are aligned in their quest to maximise respect and inclusivity of people with disabilities and health conditions. Limited research examining the language preferences of those with disabilities and/or medical issues has been mixed. The majority of the research has focused on autism, multiple sclerosis and deaf/blind populations. In some cases, studies have methodological issues, and researchers have concentrated on the perspectives of students, employees and counsellors. Factors that may influence preferences, such as disability type, severity, acceptance and identity, have not been adequately examined in the research. Future research is required to gain an evidence-based understanding of language preferences that can improve social inclusion for people with varying disabilities and health conditions. What is already known about this topic: (1) There is ongoing debate about the use of person-first versus identity-first language. (2) Both proponents of person-first and identity-first language are aligned in their quest to maximise respect and inclusivity of people with disabilities and health conditions. (3) Some disability scholars have proposed that psychologists use person-first and identity first language interchangeably. What this paper adds: (1) An overview of previous research finds that much has not been conducted in people with disabilities and is inappropriate for generalisation more broadly (2) There is a deficit in knowledge about factors that may influence language preferences, such as disability type, severity, acceptance and identity which have not been adequately examined. (3) Future research is required to gain an evidence-based understanding of language preferences that can improve social inclusion and maximise respect for people with varying disabilities and health conditions. [ABSTRACT FROM AUTHOR]

Medication is closely involved in the subjective experience of chronic diseases, but also in the chronification process of illnesses which is described in this paper in the specific case of HIV. The development of antiretroviral drugs (ARVs) and the progressive recognition of their potential dual use as treatment as prevention (TasP) and pre-exposure prophylaxis (PrEP) reshape the experience of HIV and its transmission. Acknowledging the importance of a socioanthropological approach to drugs, this paper highlights how therapeutic strategies of treatment and prevention currently shape the process of HIV chronification and its experience for people concerned with ARVs in Switzerland, whether they are seropositive patients on lifelong treatment or seronegative people affected by the preventive properties of drugs. [ABSTRACT FROM AUTHOR]

Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance. [ABSTRACT FROM AUTHOR]

This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes. [ABSTRACT FROM AUTHOR]

This paper investigates how the notion of comprehensive care (CC) in haemophilia is presented in institutional guidelines and specialized understandings. A literature review of the articles published in Haemophilia was carried out. The main features which authors refer to when mentioning CC were outlined and compared with the principles, assumptions and recommendations set by the World Federation of Haemophilia in relation to this care model. The results show a fragmented scenario. First, very few articles are devoted/explicitly refer to CC. Second, only a few of them completely adhere to the notion of CC as proposed in institutional guidelines. In contrast, most articles stress a single feature, providing a partial view of the model. The focus is mainly on promoting physical health, which is however frequently associated with psychosocial health. Multidisciplinarity has great emphasis, too. Third, some key issues for CC emerge. They are implicitly present in institutional guidelines, but they become the very focus of some articles, which reflect on three challenges to be dealt with: care for all, transition care and systemic care. Such challenges offer the opportunity to clarify and expand the notion of haemophilia CC, and to propose future developments in research projects and interventions. [ABSTRACT FROM AUTHOR]

This paper explores the experiences of students with chronic illnesses in UK universities. Sixty-seven students with chronic illnesses completed an online survey with open-ended questions about their experiences in higher education. Questions covered four main topics: academic work; university staff; social and extracurricular activities; and participants' miscellaneous opinions. Using thematic analysis, the data were analysed with references to the social model of disability and social representations of chronic illness. Participants wrote of misconceptions surrounding chronic illnesses, a sense of inequality, and feeling undervalued. Many staff members seemed to lack understanding and so 'policed' academic regulations rather than accommodating for their chronic illnesses. However, some participants wrote of social and academic 'allies' who offered understanding and proactive support. The findings add substance to the chronic illness literature with the focus on students at university, and we offer recommendations to universities for improving inclusivity for students with chronic illnesses. Disabled students with energy-limiting chronic illnesses are frustrated by a lack of support and feel that they have fewer opportunities than non-disabled students. Some university staff may hold negative views of disabled individuals, and so provide inadequate support. This can lead to students' reluctance to disclose chronic illnesses. Students with chronic illnesses felt that some staff and peers did not class chronic illnesses as 'real' disabilities and felt that they were perceived lesser than those with visible disabilities. Some students proudly owned the label of 'disabled' to educate others, including staff, who sometimes used university regulations inappropriately to excuse not adjusting support for disabled students. Some staff and students were perceived as supportive allies. Universities must listen to disabled students and those with chronic illnesses to ensure they fulfil their legal and moral obligations of providing equality of opportunity, enabling all students to succeed. [ABSTRACT FROM AUTHOR]

Abstract\nPoints of interestThe scarcity of literature in the field of chronically-ill college student development makes it difficult to determine what factors may contribute to greater levels of wellbeing for this unique group of students. Among other groups of marginalized college students, campus counterspaces have been explored and, in many cases, successfully implemented as part of university efforts to foster student wellbeing. Drawing from literature on campus counterspaces and a series of interviews with chronically-ill college students, this paper explores potential uses of campus counterspaces as a means for facilitating wellbeing among chronically-ill college students. We consider potential advantages and disadvantages when determining whether counterspaces may be useful in various higher education contexts and provide recommendations for implementation at individual institutions.This article considers potential advantages and disadvantages of using campus identity-based student advocacy groups in institutional efforts to support the development of chronically-ill college students’ wellbeing.No studies to date have considered how institutions might facilitate the development of wellbeing among chronically-ill students.We introduced the idea of identity-based student advocacy groups to chronically-ill college students and asked about their opinions of these groups, including whether they would be interested in joining and their justification for their answers.Students’ expressed insights, alongside our review of the literature on identity-based student advocacy groups, suggest that there are several potential advantages and disadvantages to consider when developing and implementing these types of groups for chronically-ill students in higher education.This article considers potential advantages and disadvantages of using campus identity-based student advocacy groups in institutional efforts to support the development of chronically-ill college students’ wellbeing.No studies to date have considered how institutions might facilitate the development of wellbeing among chronically-ill students.We introduced the idea of identity-based student advocacy groups to chronically-ill college students and asked about their opinions of these groups, including whether they would be interested in joining and their justification for their answers.Students’ expressed insights, alongside our review of the literature on identity-based student advocacy groups, suggest that there are several potential advantages and disadvantages to consider when developing and implementing these types of groups for chronically-ill students in higher education. [ABSTRACT FROM AUTHOR]

Background: Globalization has resulted in the increase of interracial and interracial-international couple relationships around the world, some of whom also live with chronic illness. Despite growing positive attitudes toward interracial relationships, these couples experience multiple health disparities and disparate treatments compared to same-race couples. Aims: In this paper, we illuminate the general experience of interracial couples around the world to: (1) draw special attention to how sociocultural discourses influence them individually and as a couple; (2) highlight the disparities in equitable health care received by interracial couples; and (3) discuss how Emotionally Focused Therapy (EFT) is a useful framework for working with interracial couples with chronic illness and how it can be a larger training area in medical family therapy (MedFT) and its application to chronic health issues faced by couples. Method: We include a case example integrating EFT and the BPSS model to address the cross-cultural experiences and treatment needs of interracial couples struggling with a chronic illness experience. Discussion: Clinical recommendations include the necessity of multipartiality and self-of-the-therapist examinations alongside sociocultural assessment and culturally atuned treatment of interracial couples with chronic illness. Future directions include advocating for the expansion of EFT training in MedFT and chronic illness treatment. [ABSTRACT FROM AUTHOR]

The landscape of cancer is changing, with earlier detection and the emergence of new treatment options signalling the potential reconfiguration of cancer (for some) as a chronic condition. Cancer is increasingly experienced in terms of chronicity, incorporating both ongoing episodes of acute treatment alongside the long-term management of disease, symptoms, and side effects. This emphasis refocuses attention toward living-with, as well as beyond, cancer. Yet, how cancer chronicity is understood and experienced by both patients and healthcare professionals remains underexplored. While sociological scholarship has critically analysed how chronic illness has been positioned as a problem of/for the person and/or the healthcare system, less attention has been paid to instances like cancer, where chronicity might be viewed as reflective of forms of success (e.g. through the deferral of mortality even in the absence of 'cure'). In this paper we draw on qualitative interview data from a large study of cancer survivorship including patients, their family carers and health professionals, across two Australian hospitals. We critically analyse the dimensions of chronicity in the cancer sphere, understanding cancer-as-chronicity as producing a particular form of subjectivity, shaped by the everyday management and experience of treatment, impairment, symptoms, and side-effects. We posit that constructions of cancer as chronic, and associated imperatives linked to longevity, commitment, and resilience, are placing new demands on patients, family carers, and professionals alike. [ABSTRACT FROM AUTHOR]

There are increasing numbers of children living with life-limiting illnesses in mainstream schools. The aim of this literature-based study was to evaluate the current provision of educational support for teachers who are teaching these children in schools. An international literature search produced 23 papers published between 2005 and July 2010 that concerned children with life-limiting illness in relation to education in mainstream schools. The analysis identified that the needs of children with life-limiting illnesses are not being well met, and there appears to be little evidence of educational support for teachers. The paper concludes that schools need to work with both the medical and social models of health/disability in order to meet the needs of children with life-limiting illness. There is some consensus that the way forward needs to include multidisciplinary working within an ecological approach that supports home, schools and the health services working together. Only one paper reported an evaluation of such an intervention. There is a need for more research, evaluation and dissemination about the experience of living with a life-limiting illness in mainstream schools and related interventions, and for this to inform professional education and the coordination of education, health and home systems. [ABSTRACT FROM AUTHOR]

This editorial draws together the key issues arising from five papers which form a special edition focusing on risk in long-term conditions. The papers address research on falls in older people (Fortinsky et al. 2009), alcohol-related brain damage (Keady et al. 2009), children with a disability (Oulton and Heyman 2009), women with endometriosis (Seear 2009) and survivorship in cancer (Roberts and Clarke 2009). These papers allow us an insight into the interplay between the individual's experiences, the services with which they interact, and the society they live in which shapes these experiences. Firstly, events which can be assumed to be catastrophic may be experienced as indeed threatening to the individual's biography but through processes such as searching for meaning there is the opportunity for reconciliation. These concepts of biography and reconciliation thread into the second issue in which risk has a dual positive and negative nature (as enhancing quality of life and as threatening safety). However, the dual nature of risk is in itself an inadequate understanding of an individual's experiences when living with the disabling effect of societies themselves, which can restrict choice and decision-making. As a result, the third issue concerns the contradictory way in which risk is used to promote safety but to also promote autonomy. This perpetual tension in the deployment of 'risk' fuels, and is reflexively fuelled by the fourth concern of this editorial; the contested and ever-changing location of responsibility and risk expertise. These dynamics of theory, policy and practice have a profound influence on the experiences of people, and demand further analysis if we are to better enable people to live positively with a long-term condition. [ABSTRACT FROM AUTHOR]

This article aims at discussing the intersections of disability and sexuality as narrated by lesbian women with chronic illness. It draws from an empirical study conducted in Portugal and Italy between 2016 and 2018 with LGBTQA + chronically ill people: in particular, the article focuses on fifteen biographical interviews collected among participants that self-identify as lesbian. The interviews highlight intersections of sexuality through the experience of chronic illness, showing different strategies through which lesbian women re-invent their own self-definition and their sexual practices in intimate encounters with partners. The first part discusses the contributions of feminist disability studies and crip studies in the understanding of the entanglements between able-bodiedness and heteronormativity. In the second section, the analysis focuses on narratives around dating: in particular, it explores the difficulties reported by participants in coming out as chronically ill to their sexual partners. In the third section, the paper discusses desires and sexual practices: since illness influences the way desires are embodied and negotiated, participants find ways to face their vulnerabilities and establish self-caring sexual encounters. The last section addresses the importance of communication in this process, enabling forms of transformative actions and resilience through sexual practices. The article aims at contributing to the existing literature on disability and sexuality, shedding light on the specific aspects of the experience narrated by lesbian women with chronic illness: such aspects challenge normative assumptions over the entanglements between disability and sexuality and question some of the pillars on which disability is constructed. [ABSTRACT FROM AUTHOR]

To review the extent to which illness representations, based on Leventhal's Common Sense Model, relate to self-management in children and young people with chronic physical health conditions. A systematic literature review was carried out to identify relevant studies and each included paper was assessed for risk of bias. Fifteen papers met criteria for inclusion within the review. The majority of studies were cross-sectional, and small sample sizes for some studies made it difficult to generalise findings. The method of measuring both illness representations and outcomes varied. Timeline, identity, control and consequences beliefs were the most frequently assessed domains of illness representations included within the studies. While there is variability, there are indications that control beliefs, specifically treatment control beliefs, are more consistently and strongly associated with self-management than other representation domains. Control beliefs should be targeted for intervention in studies trying to improve adolescent self-management. In addition, the relationship between illness representations and self-management needs to be considered within both developmental and systemic contexts. It is likely that the variation in self-management will be more fully explained in future research that explores the combined effects of individual representations and the influence of wider contexts. [ABSTRACT FROM AUTHOR]

In light of increasingly high rates of diabetes, heart disease, and obesity among citizens of the Arabian Gulf, popular health discourse in the region has emphasised the emergent Arab genome as the primary etiological basis of major health conditions. However, after many years of public dissemination of genomic knowledge in the region, and widespread acceptance of this knowledge among Gulf Arab citizens, the rates of chronic illness continue to increase. This paper briefly explores the clash between indigenous Islamic knowledge systems and biomedical knowledge systems imported into the United Arab Emirates. It presents vignettes collected from interviews and participant observation in Dubai as part of nearly four years of ethnographic research, completed as part of the author's doctoral work on ‘Anxiety and Identity in Southeast Arabia’. Rather than radically informing health seeking behaviours among many UAE citizens, the emphasis on the ‘Arab Genome’ has instead reconfirmed the authority of Bedouin cosmological understandings of disease, reshaping the language that people use to engage with their bodies and their health. Local cosmology remains a powerful discursive element that often operates in contention, in sometimes powerfully subtle ways, with novel health initiative regimes. For many people in the region, genomic information, as it is often discussed and propagated in the UAE, shares an intimate relationship with ideas of fate and national identity, and sometimes serves to mitigate the increasingly uncertain terms of engagement that people share between the body, their health, and rapidly changing urban landscapes. [ABSTRACT FROM AUTHOR]

This scoping review focuses on identifying the quantity and quality of research evidence available with regard to online interprofessional education related to chronic disease management. Recent advances have seen the emergence of information communication technology and digital health solutions that may improve monitoring of and self-management of chronic disease. With the growing chronic disease burden globally, and the advancement of information communication technology, digital health solutions may improve chronic disease monitoring and self-management. However, health professionals are slow to utilize this technology in chronic disease management. Online education has the potential to enhance utilization of digital health solutions across interprofessional healthcare teams. This scoping review focuses on online interprofessional education and eLearning strategies used to promote engagement and achievement of learning outcomes between health care professionals in chronic disease management. A systematic search of the literature yielded 3112 papers; 15 studies were included in the review following an independent screening process. The review found very limited research for online interprofessional education related to chronic disease so it is not feasible to comment or draw conclusions in relation to its impact on interprofessional learning, student engagement in education or its impact in practice, services or health outcomes. Research methodology and online eLearning strategies varied across studies, highlighting the need for further rigorous studies that include consistency in online interprofessional education strategies, evaluations and study methods. [ABSTRACT FROM AUTHOR]

There has been a dramatic improvement in the survival of children with perinatally-acquired HIV (PHIV) following the introduction of effective treatment in 1990s. The care for children living with PHIV is now focused on more accurately understanding the effects of both HIV and HIV treatment on the developing body and brain. An evaluation of current HIV neuroimaging, and neurocognitive research, when combined with clinical experience in the area of HIV, could help to inform United Kingdom (UK) PHIV service provision. This paper argues that an understanding from a neuropsychological perspective will help these young people to optimize their health, quality of life, and future functioning. The aim of the paper is to bring together research and clinical understanding of HIV and its treatment effects on the developing brain, together with an understanding of other potential neurological risk factors. It is argued here that there is a need for targeted neuropsychology assessment and preventative interventions, supported by clinical and preliminary research on the neurocognitive effects of HIV and its treatments. [ABSTRACT FROM PUBLISHER]

Previous research has suggested that a recapitulation of developmental stages occurs during periods of readjustment in situations involving significant contextual or environmental change. The purpose of this paper is to examine if evidence exists for developmental recapitulation among middle-age and older adults adapting to recent vision impairment. Psychosocial development was operationalized in accordance with Erikson's stage theory (Erikson, 1963, 1980) and measured using the Inventory of Psychosocial Balance (Domino & Affonso, 1990). Data were obtained from 99 middle-age and 96 older adult vision rehabilitation service applicants and compared with normative scale data for these age groups. Results found significantly lower Trust, Initiative, Industry, and Intimacy scores for middle-age adults and lower Initiative and Industry scores for older adults. Unexpectedly, middle-age adults who were visually impaired had significantly higher Integrity scores compared to the normative group. Findings provide preliminary evidence for developmental recapitulation of psychosocial stages in the process of adaptation to vision loss in middle age and older adults. Implications of these findings are discussed in terms of social work practice with this population and future research. [ABSTRACT FROM AUTHOR]

This paper presents empirical research from a study of trust and co-operation between chronic illness patients and their physicians, conducted in nutrition clinics. The paper details models of trust and co-operative behaviour designed to aid interpretive analysis. The paper then presents an interpretive discussion of 16 examples from interactions observed between patients and their consultants at the initial visit and revisit stage of the illness management process in consecutive clinics. This illustrates some of the ways interpersonal trust development between patients and their physicians may affect health care delivery. The paper finds physicians appear to make in-clinic opportunities for building resilient trust relations with patients based on common understanding and experience, engendering more rapid patient compliance. This is further promoted by a contemporaneous positive focus on key issues, such as patient-perceived importance and patient-perceived self-competence, serving to lower patient co-operation thresholds. In the best instances, the combined effect is significant patient empowerment, and thus improved health care delivery as a result of the compliance thereby achieved. In addition, it is suggested the speed of trust development during the interactions is not commensurate with long term relationship sustainability, and suggests this as an explanation for, amongst others, failure to attend rates. [ABSTRACT FROM AUTHOR]

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis. Myasthenia Gravis is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness. Currently, I have only minor symptoms, I am not seriously impaired, and I do not suffer from any social disadvantage because of my illness. Yet, my life and my body since my diagnosis feel different than before. In this paper I aim to make this feeling intelligible and propose that it is a state of what I call ‘latent impairment’. Latent impairment is a state of being ‘in between’, different from being actually impaired and also different from being abled-bodied. The theory takes its cues both from social constructionist theories of disability as well as theories of (chronic) illness and their focus on the importance of subjectivity. Furthermore, I suggest that a phenomenological understanding of latent impairment can show possible ways of becoming an ally to the DRM. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to present a stepwise, multi-construct, innovative framework that supports the use of eHealth technology to reach sexual minority populations of color to establish trustworthiness and build trust. The salience of eHealth interventions can be leveraged to minimize the existing paradigm of medical mistrust among sexual minority populations of color living with chronic illnesses. These interventions include virtual environments and avatar-led eHealth videos, which address psychosocial and structural-level challenges related to mistrust. Our proposed framework addresses how eHealth interventions enable technology adoption and usage, anonymity, co-presence, self-disclosure, and social support and establish trustworthiness and build trust. [ABSTRACT FROM AUTHOR]

Healthcare reform, including the focus on chronic illness, the growing role of neuroscience, the emphasis on collaborative interprofessional care, and more recently, on integrated medical and behavioral healthcare, have important implications for social work education and practice. Parkinson's disease, a chronic neurodegenerative illness exemplifying these trends, is an area in which social workers are increasingly involved. This paper provides (1) an overview of Parkinson's disease and its complexity, (2) a summary of role and functions identified in a survey of health social workers working with Parkinson's disease and/or neurology, and (3) education and practice recommendations for the social work profession. [ABSTRACT FROM AUTHOR]

The Living with a Neurological Condition (LINC) study was part of the National Population Health Study of Neurological Conditions conducted in Canada. This article describes empirical original qualitative data collected in the third and final phase of this study and examines how individuals living with a neurological condition maintain continuity of their sense of self, with a particular focus on their strategies. Fifteen interviews were analysed for this paper. Emerging strategies for maintaining sense of self include: (1) avoidance and denial, (2) cognitive reframing, (3) articulation of the self through imagined positive identity, (4) strategies that reconnect to identity in the past, (5) adjusting and altering goals, (6) spiritual activities, (7) humour, (8) comparison with others: identity as shaped through social constructs, and (9) creating communities: a reciprocal reflection of self. [ABSTRACT FROM AUTHOR]

Aboriginal and Torres Strait Islander people are the Indigenous people of Australia. The prevalence and burden of chronic disease among them is significantly higher than that of non-Indigenous Australians. This paper describes the chronic illness experiences of 19 Aboriginal and Torres Strait Islander people living in urban areas in terms of their strategic representations of self. Participants in this study used techniques of revealing and concealing chronic illness. These strategies were employed in multiple arenas - among family, among broader community, and in specific spaces including health care services. They highlight tensions that arise through the intersection between the desire to preserve family and community life, and the ways in which the physical body manifests chronic illness. In this paper we bring together notions of time (drawing on Zimbardo's time perspectives theory) and biography (drawing on Bury's disrupted biography theory). Through an analysis of shifting boundaries we conduct an exploratory investigation of the ways in which urban Aboriginal and Torres Strait Islander people in this study weave together elements of both past and future perspectives to mobilise modes of self-representation and agency in their management of chronic illness. We then consider some options for primary health care. [ABSTRACT FROM AUTHOR]

Objectives to analyze the development of the elderly patients with chronic diseases and to make some suggestions for the elderly social hospitalization. Methods By using yearbook data and theoretical analyses, the paper respectively presents the problems and furthermore solutions of China's elderly services. Results The elderly patients with chronic illnesses have formed a new group, and the phenomenon of “socialization of elderly hospitalization” has become a major social risk. Discussions China needs to promote the idea of “long-term care” in elderly social security, establishing long-term care insurance and fostering a private, professional elderly service system. [ABSTRACT FROM AUTHOR]

This paper describes a developmental psychotherapy undertaken with a physically disabled latency boy, with a background of significant developmental deficits and multiple psychological trauma, diagnosed by CAMHS as being on the autistic spectrum. Using an assessment framework following Anna Freud’s conceptualisation of developmental lines, pathology as a deviation from the norm was formulated. Assessments using standard psychological tests were made at the beginning, in the middle, and at the end of his therapy, in order to study the changes in his personality development. Standard assessment findings were also used to portray the fragmentation of the boy’s psyche in a concrete fashion, in order to facilitate his re-integration. [ABSTRACT FROM AUTHOR]

This paper explores specific challenges in implementing community-based group interventions with adolescents and makes practical suggestions to researchers who contemplate the group approach. Group interventions have important implications for adolescent research and program development in the area of chronic illness. They have a capacity to address participants' psychosocial needs as well as to offer a cost and time-effective opportunity for disease-specific education. A group intervention encompasses an array of pragmatic challenges that need to be addressed through meticulous preparation. Based on the authors' firsthand experience with a group intervention for adolescents with asthma, this paper describes potential difficulties and logistics pertaining to recruitment, planning and implementation of a group intervention targeting adolescents and suggests general strategies that can be adopted. [ABSTRACT FROM AUTHOR]

This paper looks at marginalization in two realms: chronic illness and qualitative research. It conceptualizes marginalization through examining stories about experiencing chronic illness. Marginalization means boundaries or barriers, distance or separation, and division or difference. Marginalization assumes a core of enacted rules and measures that frame the social lives and subjective realities of those who do not fit. Being marginalized causes suffering but can transform stigmatized people and qualitative researchers. Qualitative psychologists can embrace the freedom marginalization allows and construct a separate community that ultimately moves inquiry away from established margins. The paper ends with ideas for increasing the transformative power of qualitative research. [ABSTRACT FROM AUTHOR]

In this paper we describe some of the unique personal, medical, social, and religious challenges facing people living with chronic illness and disability. Our specific focus involves the connections between suffering, healing, and disability in two religious traditions: Buddhism and Christianity. Two core questions focus our inquiry. First, why are chronic illness and disability often associated with merited suffering in Buddhism and Christianity? Second, what types of Buddhist and Christian practice can help cultivate spiritual healing in the midst of chronic conditions? [ABSTRACT FROM AUTHOR]

Non-communicable diseases, especially diabetes mellitus type two (DM2) constitute major health problems in Lebanon that have an adverse impact on health and health resources. Collaborative practice interventions may improve quality care of DM2 and reduce or delay complications. The purpose of this paper was to evaluate the impact of collaborative practice on the quality and cost of effective care for diabetic patients in a primary health care center. A chart audit review of 375 diabetic patients attending an inner city health center in Beirut (Lebanon) was conducted after three and a half years of collaborative practice intervention, which included guidelines for an interdisciplinary health team. Evaluation of the impact of collaborative practice was conducted on the process and outcome of care. The results indicated a high level of enthusiasm, support and the development of team spirit at the process level. At the outcome level there was improvement in documentation, increase in patient recruitment, increase in continuity of care, improvement of glycemic control and decreased cost. In conclusion collaborative practice interventions improved process and outcome variables for diabetic patients. It is suggested that this model could be developed for use in the care of other chronic diseases. [ABSTRACT FROM AUTHOR]

This paper presents a simple typology of different forms of engagement with the Internet by families with children with various forms of chronic illness. The analysis is informed by ongoing debates about the nature, distribution and efficacy of reflexivity in contemporary social life, especially as it relates to the changing nature of information and knowledge. Drawing upon qualitative interviews with sixty-nine parents and sixteen children, the paper offers a nuanced account of the manner in which laypeople are engaging with e- health. It is an account that argues that any reading of the 'digital divide' that is based upon a simple homology between socio-structural location, reflexivity and differential ability to gain material purchase from information in the 'information age' is misjudged. [ABSTRACT FROM AUTHOR]

This paper examines the experiences of gay men living with disabilities or chronic illness from a social constructivist perspective. Emphasizing the sociocultural aspects of disability, such an approach recognizes that the questions asked and the answers given about disability are embedded in sociohistorical contexts, and that language both shapes and reveals underlying assumptions and behaviors related to disability. Using Kameny's (1971) concept of sociological minority, it is proposed that gay men and persons with disabilities constitute minority groups with experiences in common with those of other recognized minority groups. Implications for mental health practitioners providing services to gay men with disabilities are addressed. [ABSTRACT FROM AUTHOR]

Many patients given a diagnosis of a long-term illness have to make substantial adjustments to their own lives, as do their partners. There is evidence to show that partnerships are subject to intense stress throughout long-term illness, and that the 'unaffected partner' may paradoxically be more affected than the patient. This paper provides evidence for this and for the need for couples to devise coping strategies right from the initial diagnosis through rehabilitation to share the burden as much as possible, and to avoid unilateral dependency. The paper considers the pressures facing the couple, and the range of healthcare and community supports for the couple wishing to use their relationship as a primary source of support in chronic illness. Certain illnesses are considered in more detail, and guidelines for good practice for clinicians working with couples who are sharing the load are given. Specific focus for the sexual and relationship therapist is also suggested. [ABSTRACT FROM AUTHOR]

It has been theorized that network relationships link the Sustainable Development Goals (SDGs) in both synergistic and obstructive relationships. Using household survey data collected in Maputo, this investigation assesses these relationships in a case study of SDG 3 (Good Health and Wellbeing), SDG 2 (Zero Hunger) and SDG 1 (No Poverty) in Maputo, Mozambique. The results indicate that these households with chronically ill members have a slightly increased odds of experiencing poverty and food insecurity and tend to experience these challenges concurrently. This investigation highlights some of the challenges for achieving these SDGs in Maputo. [ABSTRACT FROM AUTHOR]

This paper explores recent changes in the negotiation of female old age in Southeastern Botswana. Over the past one-quarter century epidemiological and demographic transitions, increasing pressures on lay nursing care, changes in work, and the introduction of pensions have led to a fracturing of old age. The constituent elements of old age--senescence and social elderhood--have shifted at different tempos and in different directions in historically contingent ways. Using Margaret Lock's notion of "local biology," this paper explores transformations in the bio-social dialectic that have reconfigured and redefined the aging process. It argues that the "normal" physiology and social position of seniors have changed so that chronic illness is increasingly seen as part of "normal" old age, as is the lack of socio-economic and cultural power to command care. [ABSTRACT FROM AUTHOR]

The purpose of this study was to explore the use of narrative as a tool to understand the experience of chronic illness. The study is phenomenological in nature, using elements of grounded theory and social constructionism to consider the data collected. As examples of the issues raised using the narrative approach, the paper describes four themes that were pervasive in the first-person accounts of these individuals: 1. Emotional reaction to the diagnosis-Because of both the form and content in the narratives, these are described as 'peak experiences'; 2. Impact of stress-As a precipitator of symptoms or illness, as an ongoing aggravator of the chronic illness, or as a factor in overall coping with the chronic illness; 3. View of death-Named by all four individuals as it relates to their view of life; 4. Illness meaning—Coined by two of the individuals as 'philosophy of life.' These themes were interpreted in terms of their implications for therapeutic relationships with people with disabilities and chronic illnesses. [ABSTRACT FROM AUTHOR]

Adherence to prescribed treatment is a pressing issue for adolescents and young adults with cystic fibrosis (CF). This paper presents two narratives from the thematic analysis of unstructured interviews with 14 adolescents, young adults, and older adults living with CF. Through a new identity-based framework termed recursive perception that draws focus on how an individual perceives how others view them, it explores the social context of adherence and self-care among young adults with CF. It demonstrates that an individual's understanding of self and desire to maintain a certain image for peers can be deeply embedded in adherence and self-care patterns, leading individuals to feel they need to choose between tending to their health needs and living their lives. This suggests that current biomedical innovation in CF care must be complemented with renewed efforts to find effective means to empower young adults with CF to successfully navigate the social challenges of their illness and avoid the pitfalls of nonadherence that can lead to a permanent worsening of their health condition. [ABSTRACT FROM AUTHOR]

This paper reports on a small-scale project undertaken with tertiary students who identified as having an impairment either at enrolment or by registering with the university's Disability Support Unit (DSU). The aim of the study was to explore with these students ways in which the university was currently meeting their academic support needs and the ways in which these needs might be better met. Consistent with the definition of disability within the Australian Disability Discrimination Act, it became apparent that a significant number of students who identified with that definition, or sought help from disability services, also presented with needs arising from chronic illness. The majority of participants cited an emotional or psychological illness, rather than a physical, intellectual or sensory one, as a possible precursor to difficulties in engagement with the university. We conclude by considering whether commonly used institutional categories are apposite to an understanding of the ways in which students perceive themselves and, importantly, their engagement with the university and success within it. [ABSTRACT FROM PUBLISHER]

This paper inquires into the experiences of an early childhood educator named Claire who taught a young girl with a chronic illness at East Willows Elementary School, a western Canadian elementary school. Using narrative inquiry as the methodology, Claire’s experiences in her curriculum making alongside Madeline a young girl with Turner syndrome were explored and analyzed. In navigating through this curriculum around chronic illness, Claire negotiated liminal spaces between health and unhealth, sickness and wellness, capability and desire using stories of playful curriculum making. Through these liminal spaces, Claire created forward-looking stories of a new curriculum; a curriculum defined by playfulness, counterstories of play, the lived and planned curriculum, and the sharing of authority. This playful curriculum, this curriculum of play, became the negotiated story to live by for Claire and Madeline at East Willows Elementary School. [ABSTRACT FROM PUBLISHER]

This study examines experiences of living with chronic illness for haemodialysis patients. In order to understand these experiences the paper takes an existential-phenomenological approach. Interviews of seven participants (five males, two females) were collected in a haemodialysis clinic. Based upon the participants experiences three core themes emerged: (1) the challenges of living with chronic renal failure; (2) body changes and embodiment; (3) their illness experience and social relationships. The findings suggest that the illness experience of chronic renal failure is an on-going struggle to attain a sense of control. We suggest that where a sense of control is limited this can create a sense of powerlessness. Further, the illness experience was not solely restricted to the individual, but also affected wider social relationships. It is only through taking into account the context of patients experience of illness that clinicians/nurses can meaningfully draw on all aspects of evidence to reach integrated clinical judgement. [ABSTRACT FROM AUTHOR]

The ways that individuals manage their behaviours in the workplace have received increasing amounts of attention since Hochschild's initial work on emotional labour. Since that time, aesthetic labour has been explored and varying forms of emotional labour or emotion work have been researched. Progressing this area of research into the working circumstances of individuals with chronic illness has unearthed three new modes of working which are based on similar principles to emotion work and aesthetic labour. These are called adaptive work, asymptomatic work and symptomatic work. Working with chronic illness is a unique experience and requires the use of skills beyond those normally utilised in the deployment of emotion/work or aesthetic labour. This paper will discuss on adaptive work, asymptomatic work and symptomatic work and relate them to the workforce experiences of women with chronic illness. [ABSTRACT FROM AUTHOR]

The chronically ill patient must adjust to new life circumstances and manage ongoing threats to personal health. Patients often make comparisons with each other, which can have effects on their psychological and physical well-being. One question is whether health psychologists can develop interventions to strategically facilitate the use of such comparisons to optimise adjustment. This paper critically reviews evidence on patients' comparisons in studies using selection, narration and reaction methods. Discussion focuses on gaps in the empirical literature and describes some new basic concepts in social comparison, which may advance knowledge about the process in medical patients. Recommendations also are provided about the kinds of studies needed to inform the future design of effective social comparison interventions. [ABSTRACT FROM AUTHOR]

This paper shows the ways in which ‘resilience’ operates with adolescents whose lives have been marked by a significant health condition. It is based on a qualitative study that followed 31 adolescents, dealing with chronic illness, across 3 years of their lives. The study placed the adolescents at the centre of the research process, allowing them to articulate their experiences and perceptions of themselves, both visually and verbally. A complex portrayal of risk and resilience emerged as the young people spoke about the challenges they faced. Described by many around them as ‘resilient’, the research found that one key component of this was the participants’ desire to live lives as ‘normal’ as possible even when faced with management challenges associated with their health conditions. Even though many described ongoing disconnection with school, education still played an important role in their life goal setting. [ABSTRACT FROM AUTHOR]

Chronic illness often goes hand-in-hand with absence from school, and students miss out on learning opportunities at school for extended or accumulative periods of time. Many young people seek to continue their school studies nonetheless. The need to consider viable ways to support them academically arose in the context of a project calledLink ‘n Learnfunded by an Australian Research Council Linkage grant (2008–2010). This paper reports on one aspect of the project – an in-depth qualitative case study of 22 participants: senior secondary students with diverse types of chronic illness who were continuing their studies during absence from school and their mathematics teachers. The study found that the students’ concerns centred on academic issues – their perceived need for support from and interaction with their teachers. The teachers' concerns focused on medical issues – their students having to manage illness. Facilitators of these students' ability to continue studying included their ambition, perseverance with independent learning, initiative in seeking help, and quick recovery from medical treatment cycles. Teacher-related facilitators included the teachers' willingness to interact using communication media, confidence in initiating contact, and ability to modify their students' learning programme. Other facilitators included a responsive school technology department, technology tutoring from students, and the involvement of family members or tutors. Outcomes for students and teachers of their interactions with each other during lengthy periods of absence, and implications for schools, are discussed. [ABSTRACT FROM AUTHOR]