Experience Of Chronic Illness Research Articles

Exploring the patient experience of chronic illness through literature and film

Objective: Caring for patients with a chronic illness requires a holistic approach. To help RN-BSN nursing students in a course focusing on chronic illness see the patient as a unique individual and to foster empathy by emphasizing the person behind each patient, literature and film were used to make the patient’s lived experience of chronic illness real.Methods: Students read autobiographies or biographies and viewed film about the patient experience of chronic illness. Materials were selected based on the illness and patient issues described. Using the Socratic Seminar, students prepared questions based on weekly reading assignments; faculty prepared questions for each film, encouraging active participation and group discussion of underlying insights. Many discussions revolved around select film scenes or quotations students selected from the text and the comparison to their practice experience with similar patients in the clinical setting.Results: Satisfaction with the course was overwhelming, with all students rating every evaluative category as a “5”, strongly agreeing that the course advanced their empathy towards patients with chronic illness. Comments detailed students’ having a better understanding of how chronic illness truly affects the patient and family. The books resonated with the class more than the films, as the books had more detail and put the reader into the setting as if they were the person.Conclusions: The use of literature and film is an effective means to enhance RN-BSN nursing students’ ability to understand and empathize with a patient’s needs and was successful in helping students understand the patient experience.

The experience of illness of women with endometriosis: narratives about institutional violence.

This paper conjures up the centrality of the relational category of gender to shed a light on women's life narratives with a chronic disease named endometriosis. It aims to discuss the meaning of the illness experience of women with endometriosis in the interface with institutional violence. Based on Bertaux reference, in the Narratives of Life method, twenty women participated in this research. They were invited from two virtual spaces of discussion and gatherings about living with endometriosis. Interviews were conducted in person in the States of Rio de Janeiro, São Paulo and Minas Gerais circuit. Authors sustained the theoretical approach and addressed the experience of chronic illness as a sociocultural phenomenon, metaphorical readings of the problem and criticism of institutional violence. The results identify situations of gender/institutional violence perpetrated in various women care settings. They are expressed through the trivialization of women's discourses; user-physician tensions, where the supposed lay knowledge appears as an insult to official biomedical knowledge and, mainly, the difficult access to services, leading women to a care pilgrimage and to submit themselves to care types not necessarily based on best practices.

Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care

BackgroundA compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections.MethodsVolunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders.ResultsSeven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers.ConclusionsVolunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential.

Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. One long-term acute care hospital. Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Semi-structured conversation about quality of life, expectations, and planning for setbacks. A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

Families of Children with Chronic Illness and the Relational Family Model

Families of children with chronic illness experience persistent stress. Facing the diagnosis and learning how to cope with it is a stressful experience not only for the child but also for the parents and for the whole family. The illness, with its unpredictability and treatment, disturbs their daily routine and threatens the whole family system. Parental involvement in the child’s disease management and their emotional support are crucial for effective coping and adaptation to the child’s chronic illness. The aim of this article is to present the importance of the parental role in these families through theoretical findings of the relational family model.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns.

SAYING THE WORD: VOICE AND SILENCE IN AN AUTOETHNOGRAPHY ABOUT CHRONIC ILLNESS

People living with chronic illness experience impairment in various ways, not the least of which is how they are sometimes marginalised by the people with whom they interact. Over the last few decades, as social science research has moved away from the biomedical model, research methodologies have been developed to allow the voices of people with illness or disabilities to be heard and not only to be represented by others. However, these methodologies may not go as far in redressing power imbalances as was hoped, and participants’ voices are often still mediated and subjugated to the researcher’s requirements. As a person who has lived with a chronic condition all my life, I am concerned about how I am heard and by whom, as this has often affected my self-perception and sometimes even my safety. I am also concerned about doing violence to those about whom I speak and disempowering them further. My doctoral research concerned the problematic of writing about my own experience of a chronic illness. I chose a methodology, autoethnography, that allowed me to write solely about my own experience. In so doing, I was able to consider the complexity of my own academic and narrative voices, individually and in combination. In this paper I explore the methodological and epistemological concerns around my decision to use autoethnography, as well as the sometimes surprising issues I navigated when doing so. One of these issues was the juxtapositioning of different types of texts I had written. In isolation, some of the texts show a clear influence of the very discourses to which I was trying to provide counter-narratives. When read together with other texts, they reveal a complex web of paradoxes, tensions, and silences, which allowed me to generate new narratives and to question assumptions – my own and other people’s.

Exploring the Chronic Illness Experience of Rural-Dwelling Latinos of Mexican Origin.

Chronic illness is a complex and ever-growing phenomenon that is affecting millions of Americans every day, and it is disproportionately experienced by Latinos of Mexican origin. In this quantitative study, the specific aims were to evaluate perceptions of chronic illness(es), locus of control (health and God), health status, and cultural orientation of rural-dwelling Latinos of Mexican origin in Colorado who have one or more chronic illnesses and to explore the relationships existing between these concepts. A sample of 102 varied from overall national statistics for this population in the United States by gender, mean annual income, and education completed. As Latinos of Mexican origin move toward becoming the largest minority population in the United States, it is important to improve the body of nursing science that targets this population.

Enriching the Organizational Context of Chronic Illness Experience Through an Ethics of Care Perspective

A growing epidemic of chronic illness in working populations contributes to a negative spiral of work and organizational outcomes including increased absenteeism, prolonged disability or illness claims, early work termination, and non-voluntary unemployment. Chronic illness, characterized by fluctuating trends in clinical and embodied experience along a prolonged time course, is intersubjectively experienced within a social context, and variably responded to and managed within and between organizations and countries. Drawing from global health, we discuss chronic illness experience and organizations as context for chronic illness experience. We then propose a model of ‘organizational caregiving,’ highlighting how invested relational understanding, attitude, intent, and acts of care can enrich the work and organizational experiences of employees with chronic illness.

Unfolding case study and Mask-Ed™ high fidelity simulation for chronic illness education: A case study

Student learning of effective care provision for people with chronic illness is an important component of pre-registration nursing curricula and demands specific knowledge and skills. This paper discusses the implementation of the combined pedagogy of unfolding case study and Mask-Ed™ high fidelity simulation within a 12 week unit on chronic illness in an Australian Bachelor of Nursing program. The unfolding case study develops clinical reasoning and decision making through facilitating students to progress through a case study as it develops in complexity. Mask-Ed™ is a high fidelity simulation technique in which a knowledgeable educator portrays an authentic character, but remains hidden from students by a silicone disguise. Using this combined pedagogy creates a unique and innovative opportunity to engage students in learning about the chronic illness experience. This pedagogy can support students to gain a holistic understanding of the psychosocial and physical health care needs of patients and their families and develop their therapeutic skills and clinical judgment. Integration of these interactive learning techniques has the potential to transform student learning about person-centred care within pre-registration curricula.

Entre pulsion et raison : dimensions psychodynamiques et sociologiques de la sexualité d’hommes gais séropositifs. Étude Hepaig, 2007–2008, France

ObjectivesThis paper focuses on the psychodynamic dimension of narratives collected in interviews carried out with HIV-positive gay men, and completes two previous publications concerning the Hepaig-quali study, one centred on sexuality and the other on drug use. The Hepaig-quali study was part of the Hepaig epidemiological survey on acute hepatitis C among HIV-infected gay men, coordinated by the Institut de Veille Sanitaire (InVS, France). In addition to the results gathered from questionnaires, and with a focus on the “hepatitis C event”, the present study aimed to describe sexual practices and drug use among HCV-infected gay men, to assess the motivations of these choices, to position them in relation to their life histories and healthcare experiences, and to explore how they viewed their physical and mental health. MethodologyOur study was based on two successive in-depth interviews with 31 men previously included in the Hepaig survey. These interviews, conducted by a sociologist, were fully transcribed, and analysed from a dual psychodynamic and sociological viewpoint, an epistemological stance related to the comprehensive approach to behaviours. ResultsThirty-one men were included in this qualitative study. We focused specifically on the mental health of the respondents and the psychodynamic dimension of their narratives. Despite the fact that these interviews were not equivalent to “clinical cases”, psychic issues were very much present. In their own words, the respondents talked of their experiences of stress and depression, and some mentioned suicidal ideations. Most talked readily about their practices and explained them via discourse on achieving pleasure, alongside the rational control of risks. DiscussionIn many respects, the respondents appeared as “ordinary men”, in particular with respect to their gendered socialisation and their representations of the risks. From a mental health perspective, some specificities were linked to the experiences of discrimination and chronic illness. With the permanent tension between impulse and reason, between the search for pleasure and the need to control their lives, they present the characteristics of the hypermodern individual whose contradictions are revealed in their relationship with the other. ConclusionAccurately informed, the respondents also embraced the positivist medical discourse of their caregivers, which provides them with support and helps them to face the burden of HIV and HCV infections. The evolution of gay sexual culture leads these men, via the rejection of the “condom norm”, to choose practices described as more satisfying, but entailing greater risks. Nevertheless, as with any topic, their behaviours are regulated by other dimensions than knowledge and rationality. The search for pleasure is not always restrained by the hindrance and impediments of reason. This should lead caregivers to better understand and support the efforts that their patients make to reduce risks.

Functioning Among Youth with Comorbid Mood Disorder and Chronic Physical Illness in Public Sector Care.

The current study examines parent/caregiver and youth report of psychosocial and health-related functioning among youth served in public systems of care, with mood disorder only, comorbid mood disorder and chronic physical illness, and chronic physical illness only. Participants were 539 youths (ages, 11-18; 64% male) with a mood disorder and/or chronic physical illness enrolled in a study of public sector care. Presence of mood disorder was based on youth report on the Diagnostic Interview Schedule for Children-IV. Parents reported whether they had been told by a school or health professional that their child had 1 of 8 categories of chronic physical illnesses. Psychosocial functioning was assessed with the Child Behavior Checklist and Youth Self Report. Parent and child versions of the Child Health Questionnaire assessed health-related functioning. Covariates included demographic variables, substance use, mental health service utilization, disruptive behavior disorders, and anxiety disorders. Multivariate analysis of covariances assessed differences on outcome measures among the 3 groups. Parents and youths reported significantly worse psychosocial and health-related functioning for youth with comorbid mood and physical illnesses. Generally, parents reported lower functioning in youth with a physical illness compared with mood disorder, and youth with mood disorders reported lower functioning than those with physical illness. Youth with comorbid mood disorder and chronic physical illness experience high levels of impairment. Increased screening of mood disorders in pediatric health settings is warranted. Health systems, clinics, and clinicians should focus on integrating mental and physical health diagnosis and treatment.

Ménière's disease and biographical disruption: Where family transitions collide

People's lived experiences of chronic illness have garnered increasing research interest over the last 30–40 years, with studies recognising the disruptive influence of illness onset and progression, both to people's everyday lives and to their biographical selves. We extend this body of work, drawing on the experiences of people living with Ménière's disease; a long-term progressive vestibular disorder characterised by unpredictable episodes of debilitating vertigo, tinnitus and permanent sensorineural hearing loss. In response to calls for more critical examination of the wider biographical contexts in which chronic illnesses are encountered, we draw on 28 in-depth narrative interviews with Ménière's patients and their family members to discuss how personal chronic illness experiences may be closely entwined with, and deeply shaped by, the life transitions (illness-related and otherwise) of ‘linked others’. Interviews were conducted in south west England from January to June 2015. Focusing on intersecting transitions of parenthood, caregiving and retirement, we explore how and why familial relationships can both facilitate and hinder adaptation to a lifetime of chronically disrupted normalities, contributing to fluctuating experiences of ‘cherished time’, ‘anomalous time’ and ‘turbulent time’. In so doing, we suggest that the onset and progression of chronic illness could usefully be re-conceptualised as one of many ‘biographical oscillations’ encountered during the life course that serve to re-route us between continually shifting life trajectories. In recognising life's dynamism and challenging the identity-limiting and self-damaging nature of entrenched cultural life course constructions, we suggest value in recognising alternative ways of ‘living well’ when negotiating the wide-ranging biographical maps that life can follow.

Rhetorics of the Visual: Graphic Medicine, Comics and its Affordances

Affordances, in the context of comics, connote to the general attributes of the medium such as temporality, spatiality, gestures, tone / handwriting and economy. Although comics evinces a dynamic relationship among these elements, it is possible to delineate functional and rhetorical role of these affordances on a conceptual and technical level. Taking these cues, the paper after briefly reviewing the definition and scope of graphic medicine aims to demonstrate the functional and rhetorical role of the aforementioned affordances in communicating illness and illness related experiences. Among other issues this article also seeks to address the following: how do comics engage in the visual and verbal translation of the experiences of chronic illness? how do affordances of comics facilitate the readers’ haptic experience of an author’s subjective trauma? Despite its juvenile legacy, comics capacitates graphic medicine to represent physical and emotional aspects of narrating subjective illness experiences within the medium. The paper concludes that comics is a uniquely suited communicative medium as it diagrams the interiority of illness experience, and, in the process, evolves itself as a locus of tacit knowledge through its translation and mediation of emotional truths and affective states altered by illness.

Sleep quality in patients with chronic illness.

To explore sleep quality in patients with chronic illness in primary care. Many people suffer from chronic illness with the numbers increasing. One common issue arises from problems that people have with their quality of sleep: a largely under-researched topic. This study exploring poor quality sleep allowed patients to describe their daily struggles with poor sleep in their own lives. This allowed the development of a deeper understanding of what it means to sleep poorly and find out how participants cope with not sleeping well. A qualitative approach enabling a deep exploration of patient's experiences of sleep quality was used. Interviews were conducted with a purposive sample of nine participants from a primary care clinic. Analysis utilised an interpretative approach. Data analysed produced four recurrent themes that were grouped into two categories. First, themes that identified the recognition by participants that 'something was wrong' were abrupt beginning and impact on their life. Second, themes that identified that the participants considered there was 'nothing wrong' were I am fine and I just carry on. Data revealed that poor quality sleep can have a profound effect on quality of life. Participants lived without good quality sleep for years. They had come to accept two seemingly irreconcilable ideas that not being able to sleep is an enduring problem with a distinct starting point, and paradoxically, this is not a problem that deserves much professional attention. Important original data were generated on the impact of poor quality sleep indicating that chronically disturbed sleep can increase the disease burden on patients with chronic illness. The results of this study suggest healthcare professionals need to understand how sleep quality issues impact on patient's experience of chronic illness. Data from this study will help nurses and other health professionals to deepen their understanding of the profound impact of poor quality sleep on patients with chronic illness. A programme of education highlighting the important role of sleep quality in chronic illness is suggested by the issues raised in this study. Nurses are ideally placed to assess sleep quality in patients and tailor intervention to positively affect the quality of life for this group.

Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial.

Family caregivers of patients with chronic critical illness experience significant psychological distress. To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different. Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness. clinicaltrials.gov Identifier: NCT01230099.

Provision of Child Trauma Services in Emergency Family Housing (Practice Note)

Child homelessness is highly correlated with complex traumatic exposure, which may include experiences of intimate partner violence (IPV), community violence, and chronic illness. Individuals exposed to complex trauma in childhood are at increased risk for poor health and psychosocial outcomes in adulthood. Despite this, trauma-focused behavioral health services are not a core service offered to families in shelter, and families often face barriers to accessing such services. In recognition of these barriers, a small family shelter (Jane Addams Place) secured a grant to offer trauma-focused cognitive behavioral therapy (TF-CBT) to its resident children. TF-CBT, an evidence-based practice, has proven successful in treating symptoms of posttraumatic stress disorder (PTSD) in this setting. This article describes the challenges and successes of this program, and proposes several practice implications.

Functional Bowel Disorders: A Patient's Perspective.

Functional Bowel Disorders: A Patient's Perspective.

Time and chronic illness: a narrative review.

This narrative review is concerned with the ways in which the relationships between time and chronic illnesses have been chartered in recent literature. It aims to identify types of time (referred to here as temporal structures) most commonly reported in chronic illness literature and to assess their bearing on people's lived experiences. Literature searches of three electronic databases (Google Scholar, MEDLINE, and PubMed) were carried out in November 2014 of articles published between 1970 and 2013 using the following search terms (and derivatives): chronic illness AND time AND (patient OR carer). The review followed four procedural steps: (a) comprehensive search, (b) temporal structure appraisal, (c) synthesis of findings, and (d) critical appraisal. Forty studies met the inclusion criteria and were included for review. Four types of called temporal structures had a strong presence in the literature: calendar and clocked time, biographical time, past-present-future time, and inner time and rhythms. The first three temporal structures are largely understood socially, and the fourth is predominantly understood in and through the body. Several studies reported more than one temporal structure as informing people's chronic illness experiences. A wide array of chronic illnesses were represented in these studies. Few studies reported on the experiences of people with multi-morbid chronic illnesses. Chronic illness induces new relationships to time. Drawing on Hyden (Sociol Health Illn 19(1):48-69, 1997), it is suggested that "narrative" storytelling--as a temporally informed analytic device---might prove effective for reconciling the tensions emergent from new and multiple relationships to time that chronic and multiple illnesses create. Opportunities exist for healthcare practitioners and health services to offer patients illness support that is cognisant of their relationships to time.