Experience Of Chronic Illness Research Articles

Navigating the Limits of Diagnosis: Young Adults' Experiences of Chronic Living.

Young adults living with chronic illness often experience considerable uncertainty across the emotional, cultural and medical spheres of their everyday lives. The process of seeking, receiving and reckoning with a diagnosis has frequently been an in-road for qualitative examinations of these experiences. As a result, the biomedical diagnosis has often taken centre stage in research concerning how uncertainty is managed and/or more stability is found. However, the significance of diagnosis can shift over time, and in many cases, the promise of diagnosis deteriorates as life unfolds. This study draws on a series of in-depth qualitative interviews with 33 young adults (ages 19-29) living with a range of chronic illnesses, which include auto-immune illnesses, fatigue syndromes and neurological conditions. Undertaking an inductive interpretative analysis based on constructivist grounded theory, we examine the role and meaning of diagnosis for our participants and find that they iteratively de-centre diagnosis in various circumstances. We suggest that while the way young adults manage chronic illness may involve seeking a diagnosis, navigating the shortcomings of diagnosis takes a significant emotional toll, and a failure to recognise this work is one important way that the experience of chronic illness when young can be misunderstood.

Get ready: disaster preparedness and response for people with chronic illnesses living in hazard-prone Petone, Aotearoa New Zealand

PurposeThe purpose of this research is to understand how people living with chronic illness understand their healthcare needs, particularly as they can be disrupted by natural hazards events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, people with chronic illness face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare systems.Design/methodology/approachThe research draws on a narrative analysis of in-depth, semi-structured interviews with eight people who have a chronic illness and live in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand.FindingsTwo major narrative themes were identified: “Social Capital”, which included the three subthemes of community, social connection and support and family and friends. Tellers also experienced a strong sense of “Independence”, as demonstrated through seven subthemes that included declaration, defiance, rules, experience, acceptance, responsibility, self-surveillance and self-management.Practical implicationsPractice output from this research includes the development of fit for purpose emergency management policies and other educational resources to ensure equity, access and choice for people with a chronic illness and their communities.Social implicationsThis research produces in-depth knowledge and insight into the preparedness and response needs of people who live with a chronic illness. This is an under-research area in disaster management in Aotearoa New Zealand.Originality/valueRoutine medical treatment for people living with chronic illness can be disrupted by natural hazard events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, the chronically ill face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare. This research investigates how people living with chronic illness experience disaster preparedness and response while residing in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand. The study argues that it is imperative to acknowledge the experiences of people with chronic illness as they provide specific insights into their needs during a disaster.

Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.

Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.

The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study

BackgroundHope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.MethodsWe conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients’ symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.ResultsDyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included “Living one day at the time,” “Having inner force/strength,” and “Maintaining good health.” Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.ConclusionsThe findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

Early Warning Models Using Machine Learning to Predict Sepsis-Associated Chronic Critical Illness: A Study Based on the Medical Information Mart for Intensive Care Database.

Background Patients with chronic critical illness (CCI) experience poor prognoses and incur high medical costs. However, there is currently limited clinical awareness of sepsis-associated CCI, resulting in insufficient vigilance.Therefore, it is necessary to build a machine learning model that can predict whether sepsis patients will developCCI. Methods Clinical data on19,077 sepsis patients from the Medical Information Mart for Intensive Care IV (MIMIC-IV) database were analyzed. Predictive factors were identified using the Student's t-test, Mann-Whitney Utest, or χ 2test. Six machine learning classification models, namely, the logistic regression, support vector machine, decision tree, random forest, extreme gradient enhancement, and artificial neural network, were established. The optimal model was selected on the basis of its performance. Calibration curves wereused to evaluate the accuracy of model classification, while the external validation dataset was used to evaluate the performance of the model. Results Thirty-seven characteristics,such as elevated alanine aminotransferase, rapid heart rate, and high Logistic Organ Dysfunction System scores, were identified as risk factors for developingCCI. The area under the receiver operating characteristic curve (AUROC) values forall models were above 0.73 onthe internal test set. Among them, the extreme gradient enhancement model exhibited superior performance (F1score=0.91, AUROC=0.91, Brierscore=0.052). It alsoexhibited stable prediction performance onthe external validation set (AUROC =0.72). Conclusion A machine learning model was established to predict whether sepsis patients will develop CCI. It can provide useful predictive information for clinical decision-making.

Advancing Black Men’s Type 2 Diabetes Healthcare Through Addressing Gender-centered Social Norms, Cognitive Scripts, and Manhood: An Integrated Public Health Approach for Reducing T2D Disparities

ABSTRACT In the United States, the burden of type 2 diabetes (T2D) health complications and outcomes is higher in Black men, and the diabetes disparities are escalating. Previous evidence-based research underscored the need to explore gender-specific experiences of chronic illness in social-cultural, historical, and clinical contexts. Our community-engaged qualitative study focused on learning from the live experiences of Black men (n = 15) in the Arkansas Delta area. Applying a narrative approach, we explored and learned from the participants about their perception of the consequences of T2D on manhood and the usefulness of T2D management instructions. Findings indicate that an integrated public health approach contextualizes social-cultural norms, cognitive scripts, and gender-centered expressions of manhood, a promising direction in T2D healthcare; social support is essential for emotional and physical help in continued T2D management; and connecting with Black men and their insights are vital to develop relevant and appropriate guidelines for T2D management care.

Disability, Space, and Racial Injustice: Life Writing at Angel Island Immigration Station, 1910–1940

Abstract This study integrates race and disability into a literary-historical analysis of the mostly anonymous poetry composed by Chinese migrants and inscribed onto the walls of the men's barracks of the US Immigration Station at Angel Island in San Francisco Bay, 1910–1940. Scholarship in Asian American and Asian diaspora studies has approached this body of work as a modern reinvention of traditional Chinese poetic forms within a US context. This study considers the men's barracks a protest space created under disabling conditions of confinement, and it demonstrates how Angel Island detainees critiqued the racialized and ableist systems of social control that operated at the station. The poets attest to undergoing invasive imperial regimes of bodily inspection and medicalized racial exclusion, and they document lived experiences of chronic illness, depression, and the anguished temporality of detention space. As corpus of disabled life writing by early Asian American and Asian diaspora writers, Angel Island poetry offers wider access to non-English historical vocabularies of disability as well as environmental and holistic understandings of embodied conditions beyond Western diagnostic models. As a built environmental archive and a National Historic Landmark, Angel Island is a significant cultural site for exploring how race and disability operate concurrently as social constructions.

The "in between".

When the authors were 12 and 14 years old, their worlds shifted suddenly without warning or consent, and bifurcated our lives into "a before" and "an after." They were both diagnosed with inflammatory bowel disease (IBD) and found themselves in an "in between" space-young but not healthy, sick but not dying, treatments but not cures, intestines swollen and bleeding but appearing fine on the outside, in every sense the definition: an invisible illness. Their own chronic illness experiences helped to shape our pursuit of careers in healthcare, with one of them choosing pediatric IBD psychology (Jennie David) and the other choosing pediatric gastroenterology (Samantha R. Paglinco). Being patients and healthcare professionals (HCPs) created a new "in between" space to occupy and explore. They continue on in these "in between" spaces and choose to bring all of themselves-as patients and HCPs-as theiy work with pediatric IBD patients in their endless pursuit of caring for young people as full, wonderful, complex, flawed, and worthy humans (PsycInfo Database Record (c) 2024 APA, all rights reserved).

How Do Children With Medical Complexity Die? A Scoping Review.

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.

Wait for Me: Chronic Mental Illness and Experiences of Time During the Pandemic.

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive-compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around me. The global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson's analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais's 1994 article "Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill," in which he investigates a similar phenomenon of being outside ofstructured sequential narrative timein the residents of a Boston shelter for the mentally ill.

EXPLORING EMOTION CONTROL BELIEFS ACROSS THE LIFESPAN: ROLES OF AGE AND CHRONIC ILLNESS

Abstract Existing theory and research highlights emotion control beliefs have important implications for emotion regulation and psychological well-being. Emotion control beliefs can be subdivided into four categories: the extent to which people believe 1) they can control their emotion (self-can beliefs), they should control their emotions (self-should beliefs), 3) others can control their emotions (others-can beliefs), and 4) other should control their emotions (others-should beliefs). To our knowledge, research has yet to examine how developmental factors are associated with emotion control beliefs in adults (i.e., age and non-normative experience of chronic illness). Past research highlights age related differences in emotional processes, and the influence of non-normative chronic illness on emotional well-being. Therefore, the present study utilized data from a lifespan sample of 47 participants (younger adults: n = 21, age range = 19-35, M = 27.55; older adults: n = 26, age range = 68-81, M = 72.40) to examine differences in emotion control beliefs among younger and older adults, people with and without chronic illness, and the interaction between these factors. Our analyses revealed levels of self-can beliefs were lower in people with chronic illness. In particular, younger adults with chronic illness reported the lowest levels of self-can beliefs. By contrast, among people without chronic illness, older adults reported lower levels of others-should beliefs, relative to younger adults. These findings inform theories of emotional aging, development, and health by suggesting emotion control beliefs vary with age and chronic illness.

Living with illness uncertainty: nature cure caregiving in Kerala, South India

First promoted in India as part of M.K. Gandhi’s anti-colonial project, nature cure (prakr̥ti jīvanaṁ) draws on the metaphor of vitality to frame the body as having a natural wisdom—a vital force—that works to restore health and balance. In Kerala, South India, patients forge mentorships with nature cure healers to repair their ill bodies, revive the toxic environment, and respond to moral collapse. Based on long-term ethnographic fieldwork, this paper offers a person-centred analysis of one practitioner, Dr Vinod, as he instils trust in two chronically ill patients facing uncertain futures. First, I demonstrate the limits of public categorisations of alternative medicines in India for representing the multiplicity of healers and their care strategies. Despite nature cure being outwardly centred as a mode of self-healing, Dr Vinod does not engage liberal conceptions of autonomy and independence, nor does he solely critique biomedicine. Rather, Dr Vinod attends to patients’ histories and the specific arrangements of kinship, caste, class, and gender shaping their vulnerabilities, to transform feelings of doubt into those of trust amid illness uncertainty. In this way, alternative healers hold the capacity to reconfigure socially embedded lives. Second, to illuminate how naturopathic care tactics reveal the relational dimensions of illness experience, I draw on and expand the work of philosopher Havi Carel. Carel argues that bodily doubt shapes the experience of chronic illness in three ways: loss of faith in one’s body, loss of transparency, and loss of continuity. Engaging with Cheryl Mattingly’s approach to narrative phenomenology, I demonstrate how Dr Vinod moves a step further, asking how articulations of illness and loss are inherently intersubjective. Empathetic to his patients’ social worlds, Dr Vinod gently intervenes in their lives, forging therapeutic ties to support them—all the while outwardly claiming that the locus of healing lies in the self.

The transitional experiences of an international student facing chronic physical illness

This article illuminates the author’s transitional experiences during a chronic physical illness in China. Although many studies have considered patients’ chronic physical illnesses, few have considered international students’ experiences of chronic physical illness by means of the narrative approach. The author examines her chronic physical illness journey based on transitional experience and narrative identity theory. The narrative indicates a sense of identity, agency, and adaptation to change, and the exploration of such experiences could significantly contribute to the literature on students’ chronic physical health from a student’s perspective.

Complexities of disability, chronic illness and able-bodied privilege

This video explores Gipsy’s lived experience of chronic illness to give an introduction to disability politics. She invites the listener to investigate their own relationship to disability and able-bodied privilege and how this may show up in their narrative work. Gipsy shares with us the methodology (participant action research) that enabled her PhD research work (on young women’s lived experience of chronic illness) to also be a tool for social change and to create a positive impact for participants by the collective coming together and sharing of stories.

Transmuting Trauma and ‘Alchemiz[ing] Inherited Wounds’: iele paloumpis’s disabled, diasporic choreographies of care

In the programme notes for the premiere of In place of catastrophe, a clear night sky at Danspace Project in May 2022, choreographer iele paloumpis asks, ‘What vitality allowed our ancestors to survive generations of trauma, and what wisdoms have been passed down to us?’ Moving with and through grief surrounding various connected histories of violence, paloumpis and collaborators simultaneously find modes of tuning into various connected histories of resilience. This essay explores how paloumpis and collaborators collectively tap into disability and diaspora to transform intergenerational trauma into knowledge, power and more livable forms of relationality. Through overlapping practices of textile weaving, interdisciplinary somatic practices, audio description and sculpture, the piece enacts multisensorial choreographies of care that allow for alchemical grief processes to unfold between human performers themselves, between performers and non-human materials, and between performers and audience members. Approaching choreographic practices as care practices and care practices as choreographic practices, I use the phrase ‘choreographies of care' to refer to disabled, diasporic relationalities in performance. My engagement with these relationalities takes cues from Leah Lakshmi Piepzna-Samarasinha's conceptions of ‘care webs' (2018), Édouard Glissant's theories of ‘Relation' and ‘opacity' (1997) and Alice Sheppard's discussions of care as an ‘anchor point' of disability culture in performance contexts (2021). A certified end-of-life doula and grief worker, paloumpis carves out room for shared mourning on their own terms through a process of what they call ‘alchemiz[ing] inherited wounds into collective care’ (2022b). In this article, I will attend to some of the ways in which paloumpis and collaborators move through this alchemical transmutation of trauma by weaving across differing but connected experiences of disability, chronic illness and diaspora.

Relationships Between Chronic Illness, Body Mass Index, and Patient-Provider Communication

ABSTRACT Little is known about how higher-weight patients experience patient-provider communication, particularly among those with chronic illness. This study uses quantitative analytical methods and nationally representative data to determine how patient-provider communication is affected when patients have one or more chronic illnesses, as well as if patient BMI has a moderating effect on this association. Pearson correlation and multivariate logistic regression were both used to determine the significance of these associations. A significant, negative, relationship was found between overall patient-provider communication and patient chronic illness status, but no significant relationship was found between respondent BMI and patient-provider communication. There was no observable moderation effect of respondent BMI on the relationship between their number of chronic illnesses and the perceived quality of the patient-provider communication they experienced. From this study there is evidence that patients with multiple chronic illness experience worse communication with their health care providers which could be due to numerous types of bias. More research is needed to better understand if and how weight and other bias affects outcomes for chronically ill patients. Research implications include improving the comprehensiveness of nation-wide surveys that measure health care quality to include improved measures of perceived bias, including weight bias, and patient-provider communication, as these are complex, multi-factorial concepts.

Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness

Here we propose the term ‘biographical dialectics’ as a sister term to ‘biographical disruption’ to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. ‘Biographical disruption’ and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, ‘biographical dialectics’ captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses.

Abstracts 13th PCNE Working Conference “Pharmacies' new roles in pharmaceutical care: bridging research and practice”

Abstracts 13th PCNE Working Conference “Pharmacies' new roles in pharmaceutical care: bridging research and practice”

A “Rich People’s Disease”: Migrant Workers and Structural Disability in China

ABSTRACT Drawing on fieldwork in southwest China, I examine how structural marginalization shapes therapeutic choices and healing experiences of chronic illness. I explore why Chinese rural migrant workers avoid chronic care in biomedicine to grapple with their chronic kidney disease. I show that migrant workers, who live precarious labor lives, experience chronic kidney disease as both a chronic, disabling experience and an acute crisis. I call for broader awareness of structural disability and argue that chronic disease care necessitates not only treating the disease but also the provision of equitable social security.

Patients’ lived experience and reflections on long COVID: an interpretive phenomenological analysis within an integrated adult primary care psychology NHS service

BackgroundLong Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology.ResultsA total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping.ConclusionThis study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.