Experiences Of Parents Who Have Children With Chronic Kidney Disease: A Systematic Review Of Qualitative Studies

Main Category: Urology / Nephrology
Also Included In: Pediatrics / Children's Health
Article Date: 04 May 2008 - 0:00 PDT

email to a friend   printer friendly   view / write opinions   rate article

UroToday.com - A study out of Australia looked into the experiences of parents who have children with chronic kidney disease. They reviewed 16 articles from five electronic databases. These studies used in-depth interviews of focus groups to explore experiences of parents with children who have chronic kidney disease. These children are either predialysis, on hemodialysis or peritoneal dialysis and/or children who have had kidney transplantation.

These articles showed the experience of parents of 358 children with chronic kidney disease. They had three groups of clustered themes which included an intrapersonal cluster involving living with constant uncertainty, stress and maintaining vigilance despite experiencing fatigue; an intrapersonal cluster encompassing medicalization of the parent role, dependence on and conflict with health care staff, and disruptive relationships; and the final cluster of external issues with management of medical regimen, pursuit of information and organizing transportation along with accommodation in finances, adhering to children's diets and balance medical care with domestic responsibilities.

The study seemed to show that despite experiencing physical fatigue, parents exercised vigilance in monitoring their children for symptoms and also managing complex health care issues and responsibilities. It also showed the need to deliver difficult and long term medical interventions and also being the conduit between the child and the health care provider interfered with the social life and support network of these parents. Overall the lifestyle of parents with children with chronic kidney disease is stressful.

A major strength of this study was that they used systematic review methods. They conducted a comprehensive search and then independent assessment of studies with predetermined inclusion, exclusion criteria. The downside to this study is that no attempt was made to contact the authors of the 16 articles and all the original interview and focus group transcriptions were not obtained. The study acknowledged these drawbacks and stated that they depended on what was reported by the authors of the primary studies.

In conclusion, a recommendation by this group from this study to health care providers is to develop, implement and evaluate programs that aim to improve the interpersonal, intrapersonal and external experiences of parents. They should aim at reducing parental anxiety and increase the confidence of parents to manage the care for their ill child. The group also feels that to improve parental quality of life, which could be expected to improve child outcomes, a comprehensive understanding of parent experiences and perspectives is paramount.

Reported by UroToday.com Medical Editor Pasquale Casale, MD

UroToday - the only urology website with original content written by global urology key opinion leaders actively engaged in clinical practice.

To access the latest urology news releases from UroToday, go to: www.urotoday.com

Copyright © 2008 - UroToday