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All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a 'good' death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. But is this the onlypossible narrative? In 2014, and again in 2019, I had the opportunity to spend time as an observer in a palliative care unit. I hold a BA, a PhD in Humanities, and since 2014 my research has focused on end of life care. Even though I work in a clinical lab, the day to day activity in a clinical setting is a distant reality. However, at no other point in my life have I experienced a stronger sense of 'reality'-the reality of life, of death, of what it means to love someone, of one's own life entwined with that of another person. Witnessing the end-of-life can be a profound experience-what Kant would call the sublime-and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice.

Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such “transformative experiences” for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.

The concept of biographical disruption has now enjoyed nearly 40 years of use in medical sociology. This paper argues that taking an embodied approach to biographical disruption helps to explain the concept's enduring efficacy. Drawing on the work of Maurice Merleau-Ponty and contemporary theories of embodiment inspired by his phenomenology, this paper advances that biographical disruption involves, in the first instance, a disruption to the ability to enact an embodied orientation towards the world. Biographical disruption does not, from this perspective, result from illness as such, but from the ways that illness impinges on one's physical ability to engage with daily life. This paper examines the experiences of solid organ transplant recipients for the purpose of shedding light on the conditions under which biographical disruption arises in experience. The analysis includes interviews with 36 post-operative solid organ transplant recipients (heart, liver, lung, and kidney) living in British Columbia or Ontario, Canada. These participants exhibit a wide range of illness experiences, some of which manifest as biographical disruption and others that do not. Tracing the contours of these experiences, this paper argues that the efficacy of biographical disruption for describing the illness experience depends not only on the illness experience but also, fundamentally, on the content of embodiment prior to the onset of that experience.

Sciatica is a common form of low back pain (LBP) that has been identified as distinct both in terms of the persistence and severity of symptoms. Little research has explored individual experiences of sciatica, and none focuses on individuals with the most severe, long-lasting symptoms who may experience the most profound impact. This paper addresses this gap through proposing a theoretical framework for understanding such experiences, that of biographical suspension as a form of liminality of Self. Twenty semi-structured interviews were conducted with individuals with severe sciatic symptoms between January 2016‒March 2017, as part of the UK-based SCOPiC (SCiatica Outcomes in Primary Care) randomised controlled trial. Data were analysed thematically using the constant comparison method. The concept of ‘biographical suspension’, originally developed in LBP, emerged as one whereby individuals put life on-hold in the expectation of an eventual return to their former, pain-free selves. Deeper analysis extended this concept to a form of liminality, whereby individuals are caught between pre- and post-sickness selves, unable to fully identify with either. This liminality is underpinned by ongoing beliefs about sciatica as a temporary and fixable ‘injury’ rather than long-term ‘illness’, even among those with long-lasting symptoms. This led to a disjuncture between individuals' ongoing pain beliefs and experiences, resulting in longer-term psychological impacts. Biographical suspension is further conceptualised as an experiential stage giving rise to four distinct short-term trajectories: i) symptom resolution leading individuals to occupy a clearly post-liminal state; ii) remaining in suspended liminality; iii) ongoing symptoms leading to a post-liminal state of resignation; ix) a state of being both between sickness and wellness, and straddling hope and fear; thus exemplifying differing states of liminality experienced over time. Findings have implications for the support provided in clinical settings to individuals who may struggle to self-manage due to sustained liminality of Self. Accepted version

Purpose To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). Background Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. Review Methods Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). Data Sources A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. Results Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. Conclusion The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.

Introduction Breathlessness is a prevalent and distressing symptom in intensive care, underestimated by nurses and physicians. Therefore, to develop a more comprehensive understanding of this problem, the study had two aims: to compare patients’ self-reported scores of breathlessness obtained during mechanical ventilation (MV) with experiences of breathlessness later recalled by patients and: to explore the lived experience of breathing during and after MV. Method A qualitatively driven sequential mixed method design combining prospective observational breathlessness data at the end of a spontaneous breathing trial (SBT) and follow up data from 11 post-discharge interviews. Findings Four out of six patients who reported breathlessness at the end of an SBT did not remember being breathless in retrospect. Experiences of breathing intertwined with the whole illness experience and were described in four themes: existential threat; the tough time; an amorphous and boundless body and getting through. Conclusion Breathing was not always a clearly separate experience, but intertwined with the whole illness experience. This may explain the poor correspondence between patients’ and clinicians assessments of breathlessness. The results suggest patients’ own reports of breathing should form part of nursing interventions and follow-up to support patients’ quest for meaning.

Objective Evaluate the effect of structured, guided reflection on patient descriptions of self-care maintenance and management. Background Inadequate HF self-care behaviors are linked to hospitalizations. Symptom monitoring and recognition are precursors to adequate HF self-care. Reflection on actions taken during HF exacerbations may lead to insights and future changes in HF self-care maintenance and management. Methods One-group mixed method pre-test/post-test design. Following cognitive screening, self-care maintenance and management was measured prior to the intervention at a home visit one-week after hospital discharge, and one-month post intervention. Qualitative data consisted of audiotaped individual interviews with participants, field notes and reflective diaries kept by patients. Results The results ( N = 10) demonstrate large effect sizes and increases in self-care maintenance (69.9 vs 79.6, d = 1.04) and management (47.2 vs 63.9, d = 2.53) scores after intervention. Eight themes emerged from the data that reflected the HF participant’s experience of self-care. Reflection evoked emotions around concerns for family and mortality. Participants linked symptoms experienced with contextual factors which facilitated discussion about changing future actions. Conclusions Purposeful reflection may be necessary for the development of self-care. Guided reflection on previous actions that includes contextual considerations may also play a role in enhancing self-care management by allowing the person to more fully understand the illness experience.

Context No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. Objectives The objective of the study was to develop the consideRATE questions. Methods This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). Results Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1–5). Conclusion Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

BACKGROUND Data are lacking on the relationship between hope and other variables in non-advanced cancer patients. The study explored the relationship between hope, symptoms, needs, and spirituality/religiosity in patients treated in a supportive care unit (SCU). PATIENTS AND METHODS From September 2013 to March 2014, the consecutive patients who accepted to complete: (i) Needs Evaluation Questionnaire (NEQ), (ii) the Edmonton Symptom Assessment System (ESAS), (iii) Hope Herth Index (HHI), and (iv) the System of Belief Inventory (SBI) were enrolled. Moreover, clinical/demographic data were collected and the findings were analyzed. RESULTS A total of 276 patients who completed the HHI questionnaire (participation rate 276/300 = 92%) were included; 131 reported HHI total score >37 (median value). The majority of patients had a Karnofsky performance status >80; 71% were on cancer therapies, and only 29 patients had metastases or relapse. Patients with higher HHI scores were less educated (P = 0.012), reported lower ESAS total score (15.4 versus 22.6, P < 0.001), and had less often been referred to a psychologist previously to the study (P = 0.002); patients with a higher HHI score also reported higher spirituality (P < 0.001). Some NEQ items resulted significantly associated with HHI score after adjustment for other variables: the need to have sincere clinicians (β = -2.7), better dialogue (β = -2.1), and more reassurance from the clinicians (β = -2.5); better attention (β = -4.4) and respect for intimacy (β = -3.3) from nurses; to speak with people who have the same illness experience (β = -2.5), to be more reassured by relatives (β = -3.3) and to feel less abandoned (β = -4.3). Higher SBI scores were independently associated with higher HHI scores (β = 1.7 for 10 points increase). CONCLUSIONS In cancer patients, hope can be encouraged by clinicians through dialogue, sincerity, and reassurance, as well as assessing and considering the patients' needs (above all the psycho-emotional), symptoms, psychological frailty, and their spiritual/religious resources.

This commentary to Pryma's (2017) article on women with fibromyalgia argues that intersectional approaches to health research can reveal not only how racialized institutions shape illness experience and medical care, but also how these institutions make some individuals visible, while rendering others invisible. Perhaps by adopting an intersectional approach to understanding health, we can start to unpack the multiple jeopardies faced by people of color in pain.

Experience of illness and sociology of diagnosis literatures offer valuable insights into how people live with chronic illness. In this article, we argue that investigating autoimmune illnesses contributes to the sociological understanding of illness experiences and diagnosis practices. Autoimmune is a broad category of illnesses in which a person's immune system identifies healthy cells as pathological. Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, this article shows how both broad diagnostic classifications (lumping) and narrow diagnostic classifications (splitting) are integral to diagnostic work and illness experiences. Combining the illness experience and sociology of diagnosis literatures, we theorize diagnosis as an iterative process in which people strategically use broad illness categories such as autoimmune in combination with specific illness categories such as multiple sclerosis a way to negotiate heterogeneity and uncertainty and to make sense of what is happening in their bodies. In this article, we argue that in an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness.

The current opioid crisis in North America has strengthened the boundary between "genuine chronic pain patients" and "drug addicts," though these categories are not mutually exclusive. Despite its high prevalence -more than double the general population rate- chronic pain among people who use illicit drugs (PWUD) remains an overlooked issue in both health and social sciences. Using the theoretical framework of sociology of illness experience, the aim of this qualitative study was to understand how the experience of illicit drug use shapes the chronic pain experience. We conducted in-depth interviews with 25 individuals who used street opioids and/or cocaine (with or without any other drug) and had suffered from chronic pain for three months or more. Participants were recruited from July 2017 to May 2018, in Montreal (Canada). Social deprivation and drug use increased PWUD's exposure to a wide range of health issues including chronic pain. Even when intense, pain was often described as peripheral in their life given their many other problems. They experienced double stigmatization due to the cumulation of two socially devalued statuses, "drug addicts" and "chronic pain sufferers." Their attempts to avoid stigma included valuing their toughness/endurance and pursuing physical activities despite the pain. Some reported using substances like cocaine or heroin to meet social expectations of performance regardless of pain. This study improves the knowledge on illness experiences within deprived social settings by showing how marginalization and stigma render PWUD's pain clinically and socially invisible.

"Gluten free" exploded onto the American foodscape in recent years: as of January 2013, 30 percent of U.S. adults reported reducing or eliminating gluten in their diets. How do individuals participate in the expansion of gluten-free dieting, and what are the implications of that expansion? This article is based on 31 in-depth, semi-structured interviews conducted between May and October 2012 with gluten-free and -restricted persons. I identify three interrelated factors contributing to the expansion of gluten-free dieting among non-celiacs. Participants broaden the lay understanding of gluten-related disorders, undermine biomedical authority, and diagnose others. Such participant-driven change, termed self-ascriptive looping, is one factor in the diet's rapid popularization. I show how participants question the doctor-patient relationship and increase social contestability for other dieters. My findings challenge previous work on contested illness and suggest food intolerances may require a reconceptualization of contested illness experience.

Summary Objective Migrants, especially from West African countries, are highly affected by HIV in France but their representations of the illness have not been much studied. The aim of this study is to explore their representations of HIV infection through their explanatory models and etiologic theories. Method Nine interviews of patients living with HIV from West African countries and migrants in France have been carried out with the Mac Gill Illness Narrative Interview, an interview schedule to elicit meanings and modes of reasoning related to illness experience. The illness narratives have then been analyzed through a method from medical anthropology. Findings According to this study, aids remains a shameful illness, related to immoral behaviors such as unfaithfulness, intercourses with prostitutes or a high number of partners. Causality of illness is often related to the migration story. Stigmatization of people living with HIV is prevailing in the personal experience of the illness, which leads to underestimate oneself, to stop making plans for the future and brings social loneliness because of the secret around this illness. Conclusion Like any illness, diagnosis of HIV infection involves questions: “Why me? Why now?” requiring an interpretation to recreate coherence in patients’ lives. For medicals, caring about illnesses representations of the patients helps therapeutic relationship. Complementary surveys lead by a multidisciplinary team and an interpreter at different times could improve understandings of global representations of illness and their evolution.

Chemotherapy-induced alopecia is one of the most distressing side-effects of chemotherapy. In this article we examine how patients react to hair loss due to chemotherapy; for women in particular, the reaction involves a confrontation with the lethal nature of cancer, whilst for men it is a normal and inevitable consequence of treatment. We then analyse the strategies used to cope with alopecia. One strategy involves camouflaging and hiding; the patients wear wigs in an attempt to partially or completely hide their hair loss. Another strategy is to treat it as commonplace: wearing a wig is played down and banalised. Sometimes this can take the form of provocation, in which case baldness is seen as the symbol of the cancer patient's new identity.

This phenomenological study explored the pre-diagnosis experiences of 36 men and women who learned during their adult years that they had cystic fibrosis (CF), a disease usually diagnosed in children. Four mutually-exclusive pathways to diagnosis emerged during data analysis, each determined by the extent to which participants experienced symptoms growing up and the extent to which they suspected they had a serious disease. Themes describing the pathways were developed. Pre-diagnosis experiences were found to impact post-diagnosis experiences, as well as individuals' readiness for education, treatment, and support. Recommendations for CF caregivers, consistent with the expressed wishes of participants, also emerged. Findings revealed that, at least for CF, not all arrive at diagnosis having had similar experiences, suggesting individualized approaches to initiating treatment, education, and support. Although the literature largely conceptualizes chronic illness experience as beginning with diagnosis, this study highlights the pre-diagnosis period as an important focus for additional study.

Reliance on the traditional quantitative paradigm has been the norm for exploring the phenomenon of children's illness experiences. Although it provides valuable information on the psychosocial sequelae of children in response to illness, an account of children's perspectives of the illness experience is missing. Accordingly, researchers since the early 1980s have been advocating the need to adopt the qualitative paradigm in the study of children's illness experiences. Nonetheless, even though there is a call for more qualitative research, the majority of research being conducted today still supports the quantitative paradigm. This report examines why researchers may be reluctant to adopt the qualitative paradigm. Specifically, the author proposes that this reluctance may stem from researchers' perceiving children as being less competent and social than adults, which would explain the need to research children solely from an objective, impersonal stance. Primary philosophical principles of the qualitative paradigm may be seen as barriers to accessing children's thoughts. The author suggests, however, that when children are viewed from an alternative perspective, the major principles of the qualitative paradigm may actually serve as facilitators to apprehending their thoughts and feelings. The following key principles of the qualitative research paradigm are examined: (a) realities are constructed by human beings who are viewed as active agents making sense out of the realities they encounter; (b) realities are multiple and must be perceived holistically and from various vantage points; and (c) realities are shared and mutually shaped by the researcher and research participants. Key strategies that promote successful use of the qualitative paradigm in the study of children's illness experiences are also discussed. Copyright © 2001 by W.B. Saunders Company

This qualitative study used a grounded theory approach to explore adolescent conceptualizations of their chronic illness experience and related life events. A purposive sample of 20 adolescents (12-18 years of age) with cystic fibrosis were interviewed. Adolescents used three protective strategies for reducing a sense of difference from peers: (1) keeping secrets, (2) hiding visible differences, and (3) discovering a new baseline. "Good friends" were a critical source of support and decreased the importance of differences in their social world. Interventions should focus on strategies for dealing with difficult peer situations and the negative reactions of others.

Based on family members' subjective accounts of the illness experience, this study identifies unique styles of family response to childhood chronic illness. Drawing on principles of triangulation, the investigators collected data longitudinally from multiple family members (ill child, parents, well sibling) in 63 families using structured and unstructured data collection techniques. In all families there was a school-age child with a chronic illness. Five family management styles (FMSs) were identified. Each is made up of a distinct configuration of qualitative themes. Across the five FMSs, the configurations reflect differences in the following major aspects of the chronic illness experience: definition of the illness experience, management goals and approach, and illness consequences. The five FMSs (thriving, accommodating, enduring, struggling, and floundering) represent a continuum of difficulty families experience in managing a child's chronic illness. The FMSs also contribute to understanding the underlying processes associated with differing outcomes for families and their individual members when a child has a chronic illness.

Pain is the most important symptom in most patients with arthritis. Successful management requires comprehensive evaluation of the pain including identifying characteristics of the pain, its effect on usual life activities, cognitive-affective factors, family relations, and past pain and illness experience. Interventions should be specific to the individual patient's pain and circumstances and may include medications, physical modalities, adaptive behaviors, exercises, orthotics, surgery, cognitive interventions, and others.

Support and personal needs have been empirically validated as two of the most important family need categories during critical illness. Perhaps overshadowed during the initial critical care phase by a need for relief of initial anxiety and reassurance of quality care and information, support needs emerge as family members recognize the impact of the stressful illness experience on themselves. Critical care nurses can provide social support to family members through family assessment, counseling, and support groups. Although not empirically tested, it is generally believed that such support will influence the ability of family members to provide support to the patient and thereby influence a positive recovery from critical illness.

A model which describes the process whereby recent life changes are translated to health changes through the egency of psychophysiological strain is put forward. The role of personality factors is appraised at three critical points in the process. Three personality measures are derived which seem to influence extent of reported life change, strress symptomatology and illness experience. The findings are examined in the light of both substantive and methodological interpretations.

Women in the Western world live longer than men and have lower mortality rates for most causes of death. There is strong evidence that these differences are due to women's constitionally greater resistance to infectious and degenerative disease. However, in sharp contrast to their favorable mortality, women report more physical and mental illness than men, and utilize health services at substantially higher rates. These latter differences are documented with health survey data from the United States and Great Britain. Three explanatory models to account for sex differences in illness experience are considerated: (1) women report more illnes than men because it is culturally more acceptable for them to be ill; (2) the sick role is more compatible with women's other role responsibilities; and (3) women have more illness than men because their assigned social roles are more stressful. Evaluation of these alternative models is based on a review of data from studies of variations in illness among women, and it is concluded that a model looking at illness behavior as a function of the number and character of other role obligations offers the most promise for future research.

Scales to measure health locus of control beliefs have been developed for both adults and children to assess the degree to which individuals believe their health to be the result of self-actions, the actions of "powerful" adults in their environment, or random events or fate. We have investigated how these locus of control beliefs differ at different ages and in relation to different illness experiences. Health locus of control beliefs vary consistently according to age and illness experience. Beliefs in the control of their health by chance and by powerful others are stated to be significantly stronger by younger than by older children, by children with certain chronic physical illnesses than by healthy children, and by parents of children with certain chronic physical illnesses than by parents of healthy children. The developmental trend suggested here confirms previously reported data regarding locus of control beliefs in children. The differences among children with and without a chronic physical illness, and especially among their parents, suggest that learning occurs from the experiences related to illness, resulting in an increased external orientation in locus of control beliefs. Health care professionals should be aware of the tendency for young children and for children with a chronic illness and their families to rely heavily on providers, perhaps to the detriment of their learning effective skills for independent health-related decision making.

The transitions from person to patient and back represent social decision points rather than boundaries determined by shifting biological equilibria, as doctors so often suppose. Moreover, host resistance to pathogenic agents is weakened by social stress and strengthened by social support. Thus, the efficiency and effectivenss of medical care will be improved if the clinician, in assessing patient problems, systematically inquires into the social determinants of the decision to seek help. The probability of resolving the patient's difficulties will be enhanced by targeting treatment measures at the social components of the illness experience as well as at the pathophysiology of the disease process.

After about 80 yr as a fairly stable society Roseto, over the past seven to ten years, has been undergoing a rapid acculturation into the conventional American pattern. Formerly close family and community ties have been weakened and the self-contained, self-sufficient character of the society has been eroded as the oldest inhabitants have died and the youngsters of ten years ago have come into a position of social influence. To document the changes as they have affected individuals, the Holmes Social Readjustment Rating Questionnaire was given to 204 Italian-Americans living in Roseto, Pennsylvania to ascertain what differences, if any, existed in the Life Charge Unit scores of first, second and third generation groups and to determine the degree of association between LCU scores and illness experience in these three groups. The LCU scores were found to increase with acculturation, i.e. the first generation had the lowest and the third generation had the highest LCU scores. The generational groups also differed with respect to the type of life change they experienced. The first generation reported more changes in family life, the second generation experienced more change in their personal lives and third generation reported more changes with respect to work and financial matters. LCU was found to be significantly related to illness experience. The majority of the first generation reported no illnesses, while the second and third generation were more similar than different both the number and types of illness experienced. The results were discussed in terms of the social and cultural changes that have occured in the community during the past ten years it has been undergoing study by our group.