The Importance of Raising Chronic Kidney Disease (CKD) Awareness for Young People and Parents: Young People with Chronic Kidney Disease (CKD)

The Importance of Raising Chronic Kidney Disease (CKD) Awareness for Young People and Parents: Young People with Chronic Kidney Disease (CKD)

Shahid Muhammad (The Renal Patient Support Group (RPSG), Bristol, UK) and Barbara Sen (University of Sheffield, Sheffield, UK)
Copyright: © 2014 |Pages: 15
DOI: 10.4018/IJUDH.2014100106


Chronic Kidney Disease (CKD) in young people is complex, with many requiring Renal Replacement Therapy (RRT). Young people may be disenfranchised by perceptions of helplessness and feelings of powerlessness against a backdrop of diminished health, consequently impacting on their capacity for effective coping. Not surprisingly, young people and parents/ guardians seek online support through social media which offers advantages over standard forms of engagement/ education. The claim here is that future clinicians are unable to best practice unless they get more involved in patient-led initiatives and better appreciate how young people with CKD and their parents use the internet/ social media as an effective learning resource. Social media can positively influence young people, parents/ guardians to gather resources, supporting them to develop self-care and enhance shared-decision-making, empowering them to adopt coping strategies. Health professionals should have an understanding of what resources are available to young people and parents/ guardians.
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The Paediatric Nephrology Specialty

Paediatric nephrology brings scope to collaborate amongst various organ specialties, platforms of disease-states, research in clinical and laboratory medicine, and with the intention of more science translating into mainstream practice. In appreciating the care for young people with CKD, paediatric nephrology (like many other paediatric specialties) has long implemented a clinical science ethos and thus conventionally has maintained an academic stance. Whilst nephrology is specific in its own right, paediatric nephrology becomes more intricate because of physicians caring for infants and adolescents with renal disease, Chesney (2005) states:

The future will be the focus of paediatric nephrology training. (Chesney 2005)


Clinical Medicine

Clinical Medicine is a very ‘hands on’ from of medical practice, but to emphasize how rapid changes in methodologies take place; if ‘yesterday’s’ protocols, for example, those in renal medicine that might be used to treat young people ‘today’, this could mean a subtle (but significant) difference between patient mortality, survival and morbidity ‘tommorrow’ (Trichopoulos 1996).

The immune system in young renal patients will become heavily compromised owing to infection, RRTs and a variety of other medical regimens. The physician needs to bear knowledge on entities of the immune system/ immunology and inflammation. The immunology discipline is very active in paediatric nephrology; stress needs to be placed on disease states such as glomerulonephritis and hereditary/ congenital disease. Strides have been made with respect to endeavours in transplantation (Jochmans et al. 2010; Jochmans et al. 2011; Jochmans et al. 2012; Montgomery et al. 2011; Montgomery et al. 2012a; Montgomery et al. 2012b; Rosenblum et al. 2012) and plasmapheresis protocols, (Macgee et al 2007) state:

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