Illness Narratives Through the Eyes of Parents of Children With End-Stage Renal Disease

Benveniste, Shay; Goldzweig, Gil; Jacoby, Rebecca

doi:10.1177/1049732320938040

Cited by 5 publications

(4 citation statements)

References 33 publications

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“…CKD treatments affect the body, causing changes to one’s identity [ 39 ]. Given the cyclical nature of the disease and its treatment [ 8 ], it could be said that people with CKD go through repeated biographical breaks [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

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Living normally without being oneself: A qualitative study on the experience of living with advanced chronic kidney disease

de la Cuesta-Benjumea,

Hernádez-Ibarra,

Arredondo-González

2023

PLoS ONE

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The aim of the study was to describe and analyze the experience of people with advanced chronic kidney disease. Chronic kidney disease is a growing public health problem that is on the increase worldwideThe experience of living with this illness is paradoxical, as it can include feelings of dependent autonomy, distant connection, abnormal normalcy, and uncertain hope. Every chronic disease involves a biographical alteration from the onset. For those who suffer it, it implies a breaking down and reconstruction of their everyday life. Despite the prevalence of the disease and the increase in the number of qualitative research studies in recent decades, there has not been much research on the experience of people with Chronic kidney disease. This is a qualitative study that began in 2018 and concluded in 2021.Twenty-one people with advanced chronic kidney disease were interviewed. They participated voluntarily with informed consent Participants were selected by purposive sampling. Data analysis was guided by grounded theory procedures using the Nvivo 12 software. This study reveals that people with advanced chronic kidney disease do not feel the same as they used to because their control over their lives is limited; because they feel their health is in a continuous state of deterioration; and because of the changes in themselves and in their relationships with others. With chronic kidney disease, their identity is continually called into question. The normal lives of these people–their biographical constructions–are precarious and are continuously being remodelled by the effects of treatment and the inexorable course of this disease. This study contributes to an understanding of the experience of people with advanced chronic kidney disease. It can contribute to helping health care professionals effectively support these patients in their efforts to lead a normal life and in making decisions about their treatment.

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Section: Discussionmentioning

confidence: 99%

“…The most advanced manifestation of the disease is end-stage chronic kidney failure, and it requires renal replacement therapy by dialysis or kidney transplantation [ 7 ]. This treatment can lead to a repeating cycle between dialysis and kidney transplantation [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Living normally without being oneself: A qualitative study on the experience of living with advanced chronic kidney disease

de la Cuesta-Benjumea,

Hernádez-Ibarra,

Arredondo-González

2023

PLoS ONE

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“…Initiating conversations about goals of care can be challenging, particularly if the patient and family are wedded to a restitution narrative, meaning they are committed to a cure or positive resolution to illness, despite evidence of therapeutic futility. 9 Engaging in these conversations early and often to understand the patient and family's perspective and expectations is necessary and leads to a lower likelihood of aggressive treatment in the last 30 days of life. 10 Even casual conversations about EOL preferences with the patient can shape families' experience during both the decision-making process and the time of bereavement.…”

Section: Applicationmentioning

confidence: 99%

Applying Lessons From Ars Moriendi to Foster Dying Well in Acute Care Settings

Forte,

Larkin

2024

J Hosp Palliat Nurs

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Medical and technological advances have made it possible to keep people alive well beyond what was once possible, leading health care providers to focus on life-sustaining measures rather than questioning the futility of such measures and considering quality of life. In the midst of the struggle to foster dying well in a medicalized environment, acute care nurses may be challenged with shifting the focus to providing optimal end-of-life care because of lack of training, time, and resources. A remedy for the current western societal approach to medicalized dying is to look back in history to a time during the late Middle Ages, when death was an accepted part of medieval life. A literary genre called Ars Moriendi (translated “the art of dying”) was written and illustrated to provide instruction on how to die well and how to care for the dying. Nurses can apply lessons from this text to fulfill the ethical obligation to practice with dignity and provide compassionate end-of-life care. These lessons include helping patients and families identify goals of care and accept finitude, encouraging the participation of loved ones at the bedside, and fostering reconciliation at the end of life.

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“…[19,[24][25][26][27] Benveniste et al al., (2020) and Mariyana et al, (2021) correlated the emotional burden of the parents with the absence of the possibility of recovery from the chronic disease. [26, 27] Rani et al, (2019), Rennick et al, (2019) and Balaskas (2021), indicated that the emotional burden of parents was more intense during the treatment stage of the child's chronic disease and depended on the outcome of the disease.…”

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confidence: 99%

The psychological aspects of parents who take care of children with chronic illnesses: A Review of the literature

Maria Ververidou,

Nikoleta Petarouda,

Alexandra Vaina

et al. 2023

World J. Adv. Res. Rev.

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Introduction: Nowadays, chronic diseases in children are constantly increasing. Parents have a crucial role in taking care of their children as they are responsible to fulfill their needs. This situation aggravates their psychological state. Purpose: To study the psychological effects of parents who take care of children-adolescents with chronic diseases which don’t belong to the category of rare diseases or psychiatric disorders. Methods: This literature review was conducted with data retrieved from two electronic databases, "Pubmed" and "Google Scholar". The research lasted from December 2021 to September 2022. Results: For this literature review 1433 studies were retrieved while after further analysis 32 studies were used. As a result, parents of children with chronic illness experienced the feeling of anxiety, fear, depression and emotional burden, affecting their quality of life to a large extent. Conclusions: Families caring for a child with a chronic disease were characterized by a burdened psychological state and a low quality of life, which was influenced by socio-demographic, economic and psychological factors. It was deemed necessary to provide more effective support to these families as well as to develop tools for the treatment of chronic disease.

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Illness Narratives Through the Eyes of Parents of Children With End-Stage Renal Disease

Cited by 5 publications

References 33 publications

Living normally without being oneself: A qualitative study on the experience of living with advanced chronic kidney disease

Living normally without being oneself: A qualitative study on the experience of living with advanced chronic kidney disease

Applying Lessons From Ars Moriendi to Foster Dying Well in Acute Care Settings

The psychological aspects of parents who take care of children with chronic illnesses: A Review of the literature

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