Christina E. Frandsen RN, MSc (Nursing), PhD student, Hans Dieperink MD, PhD, Bettina Trettin RN, MSc (Nursing), PhD,, Hanne Agerskov RN, MSc (health), PhD
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The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life.</p>\n </section>\n \n <section>\n \n <h3> Objective</h3>\n \n <p>Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment.</p>\n </section>\n \n <section>\n \n <h3> Design</h3>\n \n <p>An explorative study using a qualitative method with a phenomenological-hermeneutic approach.</p>\n </section>\n \n <section>\n \n <h3> Participants</h3>\n \n <p>Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members.</p>\n </section>\n \n <section>\n \n <h3> Approach</h3>\n \n <p>Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naïve reading, structural analysis and critical interpretation and discussion.</p>\n </section>\n \n <section>\n \n <h3> Findings</h3>\n \n <p>One main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>There are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience.</p>\n </section>\n </div>","PeriodicalId":16947,"journal":{"name":"Journal of renal care","volume":null,"pages":null},"PeriodicalIF":1.5000,"publicationDate":"2023-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jorc.12481","citationCount":"0","resultStr":"{\"title\":\"A life-changing process when living with chronic kidney disease: A qualitative study\",\"authors\":\"Christina E. 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The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Objective</h3>\\n \\n <p>Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Design</h3>\\n \\n <p>An explorative study using a qualitative method with a phenomenological-hermeneutic approach.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Participants</h3>\\n \\n <p>Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Approach</h3>\\n \\n <p>Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. 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A life-changing process when living with chronic kidney disease: A qualitative study
Background
Patients with chronic kidney disease and their family members experience a number of lifestyle changes caused by the illness. The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life.
Objective
Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment.
Design
An explorative study using a qualitative method with a phenomenological-hermeneutic approach.
Participants
Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members.
Approach
Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naïve reading, structural analysis and critical interpretation and discussion.
Findings
One main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone.
Conclusion
There are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience.
期刊介绍：
The Journal of Renal Care (JORC), formally EDTNA/ERCA Journal, is the official publication of the European Dialysis and Transplant Nursing Association/European Renal Care Association (EDTNA/ERCA).
The Journal of Renal Care is an international peer-reviewed journal for the multi-professional health care team caring for people with kidney disease and those who research this specialised area of health care. Kidney disease is a chronic illness with four basic treatments: haemodialysis, peritoneal dialysis conservative management and transplantation, which includes emptive transplantation, living donor & cadavaric transplantation. The continuous world-wide increase of people with chronic kidney disease (CKD) means that research and shared knowledge into the causes and treatment is vital to delay the progression of CKD and to improve treatments and the care given.
The Journal of Renal Care is an important journal for all health-care professionals working in this and associated conditions, such as diabetes and cardio-vascular disease amongst others. It covers the trajectory of the disease from the first diagnosis to palliative care and includes acute renal injury. The Journal of Renal Care accepts that kidney disease affects not only the patients but also their families and significant others and provides a forum for both the psycho-social and physiological aspects of the disease.
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