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Chronic Urinary Tract Infection in Children: An Urgent Need for Recognition and Advocacy
Deirdre Pinto1, Andrea Sherwin1
1Chronic UTI Australia, Adelaide, Australia.
Insights
Parents of children with chronic urinary tract infections (UTI) face significant challenges due to diagnostic delays and inadequate care. Improving awareness and developing specific guidelines are crucial for better pediatric UTI management.
Area of Science:
- Pediatric Nephrology
- Urology
- Child Health Services Research
Background:
- Chronic urinary tract infections (UTI) in children present unique diagnostic and management challenges.
- Current understanding of the lived experiences of pediatric chronic UTI patients and their families is limited.
Purpose of the Study:
- To explore the experiences of children with chronic UTI and their parents.
- To inform advocacy for increased awareness, improved diagnosis, and treatment of pediatric chronic UTI.
Main Methods:
- Semi-structured interviews were conducted with parents of four young girls diagnosed with chronic UTI.
- Interviews also included two adults whose chronic UTI symptoms commenced in childhood.
- Content analysis of interview transcripts identified recurring themes.
Main Results:
- Key themes included diagnostic dismissal by medical practitioners and misattribution of symptoms.
- Protracted and chaotic care pathways were identified, highlighting difficulties in accessing appropriate medical care.
- Significant negative impacts on children's health, development, and emotional well-being were reported, alongside parental distress and exhaustion from advocacy.
Conclusions:
- Development of clinical guidelines, enhanced medical education, and streamlined care pathways are essential for recognizing and managing pediatric chronic UTI.
- There is a need for child-specific research to establish safe and effective treatment protocols for pediatric UTI.
Aims:
To gain a preliminary understanding of the experiences of children with chronic urinary tract infection (UTI), and their parents, to inform advocacy for greater awareness of paediatric chronic UTI and improvements in its diagnosis and treatment.
Methods:
We conducted semi-structured interviews with the parents of four children (all girls under the age of ten) with chronic UTI symptoms and two adult sufferers whose symptoms began in childhood. Content analysis of the interview transcripts was used to identify key themes.
Results:
Four key themes were identified: (1) 'diagnostic dismissal and misattribution' (a failure of medical practitioners to recognise and diagnose chronic UTI and their tendency to attribute symptoms to extraneous factors); (2) 'protracted and chaotic care pathways' (difficulty in finding a medical practitioner to appropriately diagnose and treat chronic UTI, and a lack of clear referral pathways); (3) 'impacts on children and families' (negative consequences of chronic UTI for children's health, development and emotional wellbeing, and distress caused to parents due to the child's suffering); and (4) 'the burden of parental advocacy' (parental distress, guilt and exhaustion caused by the struggle to get help for their children).
Conclusions:
Clinical guidelines, education and care pathways should be developed to help medical professionals recognise and better meet the needs of children with chronic UTI. As well as better UTI diagnostic and treatment approaches generally, child-specific research is required to develop safe and effective treatment protocols for paediatric patients.
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