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Symbolic Representations of Living With Chronic Kidney Disease
Abstract
Visual or aesthetic data can contribute to understanding experiences that may not be able to be fully understood through spoken or written words. This article describes stories of symbols that represent the experiences of individuals living with chronic kidney disease. Symbols included both objects (i.e., a family photograph) and intangible representations (i.e., apiece of music) that were chosen because they innately held meaning to the person. Descriptive themes of the symbols included hopes and inspirations, reflections on "who I am," and confrontations of illness. Participants' expressions through symbols were further described through the use of stories of memories, emotions, and poetic devices. We contend that symbols convey aspects of experience that cannot easily be translated into oral expression.
... Despite the assumption that provision of PROs in routine clinical practice may lead to improved patient satisfaction [42], there is little evidence that satisfaction increases when PROs are fed back to healthcare providers [16,43,44]. This study suggests that use of It has previously been found that people with kidney disease find it difficult to discuss some topics [45,46], and some of the items in the ePROs, such as feelings of well-being, health, depression, being a burden to one's family, dependence on healthcare practitioners, and stress caused by kidney disease may be difficult to discuss [45,46]. Wolpert et al. [13] noted that patients were unwilling to reveal their ratings of some areas via PROs. ...
... Despite the assumption that provision of PROs in routine clinical practice may lead to improved patient satisfaction [42], there is little evidence that satisfaction increases when PROs are fed back to healthcare providers [16,43,44]. This study suggests that use of It has previously been found that people with kidney disease find it difficult to discuss some topics [45,46], and some of the items in the ePROs, such as feelings of well-being, health, depression, being a burden to one's family, dependence on healthcare practitioners, and stress caused by kidney disease may be difficult to discuss [45,46]. Wolpert et al. [13] noted that patients were unwilling to reveal their ratings of some areas via PROs. ...
... Nurses in this study emphasized that the visual (versus numerical) display enhanced efficiency and use of their time. While other researchers have identified that integration of ePROs requires upfront planning and training [3,8,46], use of ePROs has been found to be more economical in terms of time and resources [5,6,8,[46][47][48][49][50]. Integration of ePROs into the clinicians' workflow is essential, not only for buyin and support by practitioners, but also to avoid duplication of data entry. ...
Background
Internationally, the use of patient-reported outcomes (PROs) is increasing. Electronic PROs (ePROs) offer immediate access of such reports to healthcare providers. The objectives of this study were to assess nurses’ perspectives on the usefulness and impact of ePRO administration in home dialysis clinics and assess patient perceptions of satisfaction with nursing care following use of ePROs.
Methods
A concurrent, longitudinal, mixed methods study was conducted over 6 months during home dialysis outpatient clinic visits in two cities. Patients (n = 99) provided ePROs using tablet computers when they visited the clinic on two consecutive occasions approximately 3 months apart. Results were scored, printed, and given to nurses before patient appointments. Patients completed satisfaction items from the Comox Valley Nursing Centre Client questionnaire following their appointments. All clinic nurses (n = 11) participated and they were each interviewed twice, three months and six months after the start of the study.
Results
The five themes that emerged from the interviews with the nurses include: enhancing focus of the nurses, directing interdisciplinary follow-up, offering support to patients through the process, interpreting results from the visual display, and integrating into workflow.
Scores on the Client Questionnaire suggested that patients believed that they received excellent care (97%), and that the nurses perfectly understood their needs (90.9%). However, their satisfaction with care did not change over time when ePRO data was repeatedly provided to their nurses.
Conclusions
Nurses reported that sharing ePRO data in real-time informed their practice. Although there was no statistically significant change in patient satisfaction scores over time, some patients reported changes and benefits from the use of ePROs. Further research is needed to provide guidance about how ePRO data could enhance person-centered care.
... In "Symbolic representation of living with chronic kidney disease", 2 viene spiegato come la rappresentazione visiva dell'esperienza attraverso la fotografia, la performance art e altri media, possa aiutarci a vedere e sentire come l'altro vede e sente. Makaroff et al. 2 hanno chiesto a tredici persone con insufficienza renale di identificare alcuni simboli che potessero rappresentare la propria esperienza di malattia. Lo scopo era di esplorare come le esperienze dei pazienti potessero essere ritratte attraverso la rappresentazione simbolica e la narrazione. ...
Introduzione In questa seconda parte analizzeremo altri temi emersi nella revisione della letteratura della medicina narrativa nei pazienti nefrologici. Come evidenziato nel primo articolo, il nursing narrativo nasce nel 1976 grazie agli studi di Paterson e Zderald 1 che riprendendo alcuni concetti fenomenologici di Husserl, considerano il vissuto esperien-ziale come ciò che scaturisce dalla condivisione da parte del paziente e dell'infermiere, di una stessa dimensione spazio temporale. L'infermieristica narrativa valorizza la narrazione di questo vissuto, utilizzando la scrittura, la parola, la poesia, il disegno e la fotografia. Le immagini nell'approccio narrativo Abbiamo concluso il precedente articolo con un'importante riflessione sulla comunicazione attraverso le parole e su Strategie ed efficacia della medicina narrativa nei pazienti nefrologici: una revisione della letteratura. Parte 2 Abstract In this second part we will approach other themes that have arisen from narrative medicine in nephrology patients. As highlighted in the first part, narrative nursing was born in 1976 thanks to studies by Paternson and Zderarld, who borrowed from Husserl's phenomenology in viewing the lived experience as a result of sharing a time-space dimension between patient and nurse. Narrative nursing gives value to this lived experience, by using writing tools, spoken words, poetry, drawing and photography. Rubriche come, a volte, si riveli poco adatta ad esplicitare e artico-lare vissuti di sofferenza e malattia. Il difficile tentativo di esprimere l'indicibile attraverso le parole, può trovare sup-porto grazie a modalità espressive alternative come la metafora, la poesia, la scrittura creativa, la musica e l'arte. In "Symbolic representation of living with chronic kidney disease", 2 viene spiegato come la rappresentazione visiva dell'esperienza attraverso la fotografia, la performance art e altri media, possa aiutarci a vedere e sentire come l'altro vede e sente. Makaroff et al. 2 hanno chiesto a tredici persone con insufficienza renale di identificare alcuni simboli che potessero rappresentare la propria espe-rienza di malattia. Lo scopo era di esplorare come le espe-rienze dei pazienti potessero essere ritratte attraverso la rappresentazione simbolica e la narrazione. L'uso delle immagini nella ricerca non è una novità: già utilizzato in alcune discipline come l'antropologia e la
... A research of national and international literature between the years 2010 and 2015 revealed a plethora of studies reporting the experience of CKD in a fragmented way and from the perspective of sick individuals. (5)(6)(7)(8)(9) However, few studies have investigated this experience the perspective of the patient's family. In view of this, this article aimed to identify the impact of CKD on patients and their families. ...
Objectives:
To identify the impact of chronic kidney disease on patients and their families.
Methods:
This is a qualitative study conducted by the theoretical and methodological reference of Symbolic Interactionism and Narrative Research. The scenario of the study was the State of Amapá, in the extreme north of Brazil. Semi-structured interviews were conducted with 15 patients who experienced hemodialysis therapy and 16 family members.
Results:
The thematic analysis of the narratives resulted in the identification of two themes: life before the disease and life invaded by the disease.
Conclusions:
The diagnosis of chronic kidney disease and the need undergo hemodialysis emerged as a source of intense suffering, affecting the daily lives of the families as a whole and causing physical, psychological and social damages.
... This result appears reliable as the author followed qualitative research principles throughout the analysis and demonstrated trustworthiness and confirmability by including quotes from the narratives. Makaroff et al. (2013) explored how patients with chronic kidney disease expressed their experiences through symbols. This article is included here because the author concluded that the discussions between patients and nurses about symbolic representations of disease enhanced aesthetic knowing in the nurses. ...
There is wide agreement that nursing practice is a combination of art and science. While the science is easily found in nursing education, research, and practice, the art is overshadowed. Philosophical and theoretical discussions on the art of nursing are plentiful, but research demonstrating its importance to nursing practice is lacking. In this article, the nature of nursing is explored separate from science, and a comprehensive exploration of the literature on the art of nursing is presented. Three themes concerning the art of nursing are identified and discussed, including implications for research, practice, and education.
... Most of the trees' elements were narrated and had a clear meaning for the participant. Even though it was difficult to verbalize the meaning of certain symbolic representations, the drawings can be seen as an important way of expressing difficult emotions (see also Lev-Wiesel & Liraz, 2007;Schick Makarof, Sheilds, & Molzahn, 2013). ...
This paper introduces a methodological approach that was utilized when the textual material and life tree drawings of young adults with cancer were analyzed as an interwoven ensemble. In order to take the visuals seriously, the article focuses on visual narrative analysis in order to give a clear description of how the drawings were analyzed as narratives. New insights are gained when the analysis process is introduced step by step as a genuine combination of narrative textual and visual analysis. Finally, the drawings reveal new layers of experiences in a form of metaphors that reflect support, self, body, and time.
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Background: A lack of specialised knowledge about providing healthcare to older people decreases their health outcomes and quality of life. This paper presents an innovative learning strategy for pre-registration nursing students to raise awareness of person centred care of the older adult.
Method: This report is based on our own experience and includes comments from students to the authors who taught the unit of study from 2010 to 2015, supported by current literature and theory discussing contemporary educational strategies.
Results: Students came to value the older adult as a person to whom they could relate, and the learning promoted person centred care delivery. Although many students found this approach to learning challenging, student feedback demonstrated that the overall reception of the strategy was very positive.
Conclusion: This strategy facilitated learning to improve person centred care and addressed negative attitudes towards older adults, improving health outcomes and their quality of life.
In this second part we will approach other themes that have arisen from narrative medicine in nephrology patients. As highlighted in the first part, narrative nursing was born in 1976 thanks to studies by Paternson and Zderarld, who borrowed from Husserl’s phenomenology in viewing the lived experience as a result of sharing a time-space dimension between patient and nurse. Narrative nursing gives value to this lived experience, by using writing tools, spoken words, poetry, drawing and photography.
Purpose: The purpose of the study is to examine liminal experiences of living with the uncertainty of life-threatening illness. Increasing numbers of people with life-threatening illness live in-between the promise of treatment and the threat of recurrence or progression of disease, and yet this experience is not well understood. Design: A narrative inquiry methodology within a constructionist frame was used. Method: Semistructured in-depth interviews were conducted with 32 participants from three populations of interest: (a) 10 people living with cancer, (b) 13 people with chronic renal disease, and (c) 9 people living with HIV/AIDS. Findings: An overarching theme of "pervasive liminality" and four narratives are identified: storying into fear(lessness), being alive but not living; knowing and not knowing, and the (in)visibility of disease. Conclusions: Over time, living with a life-threatening illness produces complex and paradoxical experiences that do not easily fit within familiar categories of experience. Findings highlight pervasive liminal experiences as in-between narratives that are neither problematic nor need to be resolved, and endure over time.
Sociological approaches to understanding narratives of illness usually begin with oral or textual discourse. This article extends the study of illness narratives beyond oral and textual accounts to photographs. It takes the position that attempts to distinguish clearly images and words, or verbal and visual narratives, are utopian projects. It examines three photographs taken by British feminist Jo Spence (1934-92) to document her experiences of breast cancer from the time of her diagnosis in 1982 until the time of her death in 1992. After defining 'narrative' and 'photography' and explaining how some photographs are narratives, the article considers how Spence's photographs are narratives of living with cancer that incorporate visual and textual elements. It concludes by suggesting how and why extending the study of illness narratives beyond oral and textual accounts can enlarge and enrich social science understandings of people's experiences of illness.
Art making offers the opportunity to reflect upon ineffable experiences, including those surrounding death and dying. This article examines the artwork of two research participants who each reported a near-death experience (NDE). A transpersonal model was used to elicit the narratives and artwork of two individuals: one who experienced a pleasant NDE and one who experienced a distressing NDE. The author concludes that understanding the similarities and differences between pleasant and distressing NDEs may help to facilitate a better therapeutic alliance with this population and provide greater potential for client growth and transformation.
`The book has a solid practical feel to it, and although it deals philosophically with leading theorists such as Foucault, Goffman, Bourdieu and Hall it grounds the practice of visual research into everyday use... Weaved cleverly throughout are numerous practical exercises which draw together the theoretical concepts and give them a grounded rational element. This book is a valuable research tool and I would anticipate that many researchers will find it a worthwhile addition to their armoury' - Mental Health Care Providing a comprehensive introduction to the entire field of visual research, this book reviews the contributions of traditions as diverse as semiotics, ethnomethodology, symbolic interactionism and
Sociological approaches to understanding narratives of illness usually begin with oral or textual discourse. This article extends the study of illness narratives beyond oral and textual accounts to photographs. It takes the position that attempts to distinguish clearly images and words, or verbal and visual narratives, are utopian projects. It examines three photographs taken by British feminist Jo Spence (1934–92) to document her experiences of breast cancer from the time of her diagnosis in 1982 until the time of her death in 1992. After defining ‘narrative’ and ‘photography’ and explaining how some photographs are narratives, the article considers how Spence’s photographs are narratives of living with cancer that incorporate visual and textual elements. It concludes by suggesting how and why extending the study of illness narratives beyond oral and textual accounts can enlarge and enrich social science understandings of people’s experiences of illness.
The publication of this volume was assisted in part by a grant from the National Endowment for the Humanities, an independent federal agency whose mission is to award grants to support education, scholarship, me-dia programming, libraries, and museums in order to bring the results of cultural activities to the general public. Preparation was made possible in part by a grant from the Translations Program of the endowment.
AimsTo explore individuals' stories of chronic kidney disease, particularly those aspects of experience that are difficult to discuss using language (i.e. unsayable). Background
Chronic kidney disease is continuous, but it is also life-threatening and sometimes people ask difficult questions about life and death that can be challenging and for some, impossible to discuss. These unsayables' are the focus of this article. The unsayable may reside both within and beyond language. Careful analysis of narratives of illness for sayable and unsayable aspects of the experience can help illuminate new areas of concern for people with chronic kidney disease. DesignNarrative inquiry, located in a social constructionist framework, guided this study. Methods
Secondary data analysis was conducted with 46 in-depth interviews (collected between 2008-2011) with 14 people living with chronic kidney disease. FindingsThrough narrative thematic analysis, we identify that the unsayable includes the following five themes: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery and that which was untold/unheard. Whereas the first four themes attend to that which is unsayable for people living with chronic kidney disease, the last theme acknowledges that which is unsayable to people living with chronic kidney disease. Conclusion
Not all experiences of illness can be explicitly articulated in language. Listening for both the sayable and unsayable aspects of life with chronic and life-threatening illness is an important nursing role.
To examine stories of spirituality in people living with serious illness.
Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples' beliefs and perspectives relating to spirituality where there is a diagnosis of a serious chronic and life-limiting illness.
A social constructionist approach to narrative inquiry was used.
In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women.
The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language.
The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term 'spirituality'.
Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual's declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories.
To report an analysis of the concept of the unsayable.
Within nursing, there is recognition that not all experiences of illness can be fully voiced and therefore may be unsayable. However, focus has been on that which is sayable, those experiences that can be communicated through language, leaving the unsayable unexamined. There is little examination of the meaning or relevance of the concept for nursing practice.
The literature search was not limited by date and includes English, peer-reviewed texts in the databases CINAHL, Web of Science, and PsychINFO from 1959–2011.
Rodgers' method of evolutionary concept analysis was used.
References were read and analyzed according to surrogate terms, related concepts, attributes, antecedents, and consequences.
Three surrogate terms, one related concept, four attributes, four antecedents, and two consequences were identified in this concept analysis. Based on this analysis, the unsayable refers to what is not expressed yet alluded to through language and may be conscious or unconscious. The meaning of this concept differs substantially between psychology and nursing.
Although literature on the unsayable has been developed primarily outside the discipline of nursing, exploration of the concept within nursing may assist nurses to consider situations and experiences that are challenging, elusive, and perhaps impossible for patients to language while living amid illness.
The compromised health-related quality of life (HRQOL) of patients with chronic kidney disease is now well documented. The recent mandate by the Center for Medicare Services in the United States that all dialysis units monitor HRQOL as a condition of coverage has focused attention on the importance of these measures. The challenge for the nephrology care team is understanding how to interpret and utilize the information obtained from these HRQOL measurements. Can HRQOL of these patients be improved? The present review addresses this issue by commenting on strategies that have been used to improve the HRQOL of chronic kidney disease patients. A systematic approach is suggested for nephrology care providers to attempt to evaluate and improve the HRQOL of CKD patients.
Unlabelled:
In this interpretive study, the experience of patients living with chronic renal failure was studied. Within the framework of Heideggerian phenomenology, a hermeneutic analysis revealed three themes and one constitutive pattern. The three themes were: taking on a new understanding of Being, maintaining hope and dwelling in dialysis. The constitutive pattern was "
Control:
The Meaning of Technology." The findings provide an understanding of living with renal failure that argues against the traditional understanding of noncompliant behaviors. The study makes visible the meaning of technology in the lives of renal patients and highlights the need for nurses to sustain meaningful human connections with patients.
Photovoice is a process by which people can identify, represent, and enhance their community through a specific photographic technique. As a practice based in the production of knowledge, photovoice has three main goals: (1) to enable people to record and reflect their community's strengths and concerns, (2) to promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and (3) to reach policymakers. Applying photovoice to public health promotion, the authors describe the methodology and analyze its value for participatory needs assessment. They discuss the development of the photovoice concept, advantages and disadvantages, key elements, participatory analysis, materials and resources, and implications for practice.
This article describes the development of aesthetic inquiry and the emerging conceptualization of the art of nursing as an art form. Aesthetic knowing, which emerges from aesthetic inquiry, is described as connoisseurship of the art of nursing and includes appreciation of the art form and insight into meanings of the art. A method of aesthetic criticism is described that links artistic experience, history, form, alternate meanings, and future possibilities. The inquiry yielded two essential elements of the art of nursing, movement and narrative, which, when manifested as an art form have the capacity to shift experience into a different realm.
The article is based on the findings of a hermeneutic study that focused on the experience of individuals receiving hemodialysis for chronic renal failure. The purpose of the research was to begin to understand the experience and meaning of technology for these individuals. Three themes reflected the dimensions of the participants' individual and collective experiences: coming to terms with loss and limitations, abiding with technology, and enduring the treatment environment. Overall, the participants found themselves struggling to remain embodied while being transformed by a reluctant partnering with technology.
The aim of this paper is to report a study to identify themes and provide a 'snap-shot' of the scope and uses of photography in clinical nursing practice and research.
Despite the dominance of vision as a way of understanding the world in Western societies, the applications of photography in clinical nursing practice and research have not been well synthesized or reported in the literature.
A computerized search of CINAHL database was performed using the terms photographs, photography, photographic, photovoice, videorecording and videotaping. Hand searching for additional citations was also undertaken.
The identified papers on photography were categorized into broad themes that reflected the different applications to which photography had been applied: documentation and surveillance; therapeutic intervention; teaching, learning and evaluating performance; research methods; and descriptive and instructional literature. Approaches to the use of photography, as recorded in the nursing literature, are broad and include: wound surveillance, covert patient surveillance, photo essay, art therapy, self-portraits, life albums, simulated recall, participant observation, photovoice, photo hermeneutics, production of research scenarios, and video modelling.
The most common applications of photography in nursing and related journals include photo elicitation to promote understanding in research, videorecording as a method of teaching and learning, and as a method of observation, with more creative approaches tending to be employed in health professions other than nursing. Few reports gave explanations of how researchers negotiated ethical concerns when seeking approval for studies in clinical settings, and few gave details of the processes of data analysis.
According to Erich Fromm, the productive character expresses what he called the life force in ways that are, by nature, artistic in quality. His valuing of the vital and the artistic, fueled by this life force in our potential to be human, serves as the cornerstone of his model of psychoanalysis. Gilbert Rose, author of Necessary Illusion: Art as "Witness", also has identified the parallel between analytic and artistic processes, building on the assumption that the therapeutic alliance and the aesthetic alliance are one and the same. In elaborating this assumption and extending the parallel between Rose and Fromm, I draw the conclusion that the qualities of relationships have an impact on one's ability to express oneself creatively, to live an artistic life--that is, to live productively. Psychoanalysis is, in practice, a process that is artistic, creative, and re-creative in nature. To the degree that authentic expression of emotionally charged implicit knowledge of the ineffable (the emotional life that resides deep in the bodymind) results in transformation and healing, the process is artistic in nature. This process is exemplified by examining the life and literary creations of James Joyce, especially Joyce's characters of Molly and Leopold Bloom in Ulysses.
With reference to her own study of children with long-term conditions, Helen Close considers whether photography as a research method can be both valuable and ethical.
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