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The lived experience of renal cachexia: An interpretive phenomenological analysis
Carolyn Blair1, Joanne Shields2, Robert Mullan3
1School of Nursing and Midwifery, Queen's University Belfast, MBC Building, 97 Lisburn Road, Belfast BT9 7BL, United Kingdom.
International Journal of Nursing Studies Advances
|September 27, 2024
Summary
This study explores renal cachexia in end-stage kidney disease patients and their carers, revealing a significant need for psycho-social support and better healthcare professional education. Findings highlight appetite loss, functional decline, and emotional distress as key challenges.
Area of Science:
- Nephrology
- Qualitative Health Research
- Patient Experience
Background:
- Chronic kidney disease (CKD) affects 13% of the global population, with end-stage kidney disease (ESKD) leading to complications like protein-energy wasting and cachexia.
- Renal cachexia, a syndrome in ESKD patients, is poorly understood, under-diagnosed, and has limited treatment options, worsening patient prognosis.
- CKD is projected to be the fifth leading cause of 'life years lost' by 2040, underscoring the urgency of addressing its complications.
Purpose of the Study:
- To explore the lived experiences of renal cachexia in individuals with end-stage kidney disease.
- To investigate the interrelated experiences of carers supporting patients with renal cachexia.
- To provide an in-depth understanding of how patients and carers navigate the challenges of renal cachexia.
Main Methods:
- Interpretive phenomenological study design to facilitate in-depth exploration.
- Purposive sampling of seven participants (four patients, three carers) across two UK healthcare trusts.
- Semi-structured interviews conducted between July 2022 and December 2023, analyzed using interpretive phenomenological analysis.
Main Results:
- Six experiential themes emerged: appetite loss, functional decline, weight loss as a concern, social withdrawal, emotional toll of eating challenges, and psychological strain due to lack of information.
- Patients and carers experience significant psycho-social distress and vulnerability associated with renal cachexia.
- Weight loss is perceived as a visual indicator of the severity of the condition.
Conclusions:
- This is the first qualitative study to explore the lived experience of renal cachexia for patients and carers.
- Psycho-social and educational support is critically needed for patients and carers affected by renal cachexia.
- Healthcare professionals require enhanced information to recognize and address the needs of this vulnerable population, with further research needed for holistic support models.
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