Exploring the lived experience of renal cachexia

• Research type

  Research Study

• Full title

  Exploring the lived experience of renal cachexia for citizens with end stage renal disease and the interrelated experience of their significant others.

• IRAS ID

  316060

• Contact name

  Joanne Reid

• Contact email

  j.reid@qub.ac.uk

• Sponsor organisation

  Queens University Belfast

• Clinicaltrials.gov Identifier

  n/a, n/a

• Duration of Study in the UK

  0 years, 10 months, 29 days

• Research summary

  Summary of Research
  This research aims to explore the lived experience of significant, unintentional weight-loss for citizens with end stage kidney disease (renal cachexia) and the interrelated experiences of those who they deem to be the significant people in their lives. Very little is known regarding the experience of renal cachexia. Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of patient and caregiver perceptions and experiences. This information is urgently needed to better prepare healthcare providers and in turn support citizens with end stage kidney disease and their significant others. Qualitative research will provide this information through interviews with those with end stage kidney disease experiencing unintentional and significant weight-loss and those who they deem to be the significant people in their lives. This study will help healthcare providers understand what challenges citizens with end stage kidney disease and their significant others face and aims to help in developing future supportive interventions which recognise and respond to the needs of others experiencing kidney disease and their significant others.

  Summary of Results
  Analysis generated six group experiential themes: the lived experience of appetite loss, functional decline and temporal coping, weight loss a visual metaphor of concern, social withdrawal and vulnerability, the emotional toll of eating challenges and psychological strain amidst a lack of information about cachexia (disease-related wasting).
  This is the first qualitative study exploring the lived experience of renal cachexia for patients and carers. Our study highlights that psycho-social and educational support is urgently needed. Additionally, healthcare professionals need better information provision to help them to recognise and respond to the needs of this population. Further research is required to develop models of holistic support which could help patients and carers cope with the impact of renal cachexia and optimally manage this syndrome within the family unit.
  For further details see - https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1016%252Fj.ijnsa.2024.100235%2FNBTI%2FzpC6AQ%2FAQ%2Fe9214861-642f-4b3e-a4ff-2b72845d077b%2F3%2FPX0HOsMFjQ&data=05%7C02%7Capprovals%40hra.nhs.uk%7C4fb1bacfe43643d54c1b08dd2ffaf5ca%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638719477100717092%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=oZhwwHLSmA4XyfZ9Xvv3%2FoasLB5l9UaMyuB8kd46YuU%3D&reserved=0

• REC name

  HSC REC A

• REC reference

  22/NI/0107

• Date of REC Opinion

  20 Jul 2022

• REC opinion

  Further Information Favourable Opinion