Parent perception of telemetric intracranial pressure monitoring in children - A qualitative case study

Abstract

Introduction: Telemetric monitoring of intracranial pressure (ICP) in children with a complex cerebrospinal disorder might help parents distinguish acute and potential life-threatening symptoms of hydrocephalus from other illnesses. Research question: What is patient and parent perceptions of system utility of telemetric ICP monitoring, and how does a long-term telemetric implant influence daily life of both patients and their families? Material and methods: A qualitative case study design with a focus group interview including parents of children with a complex cerebrospinal fluid disorder and an implanted telemetric ICP sensor. Results: Three parents participated. Based on thematic analysis, three themes were created: ‘Daily living with telemetric ICP monitoring’, ‘Parenting a child with a CSF disorder’, and ‘The healthy sibling’. The ICP sensor provided the parents with security and made them trust their intuition, while the possibility of home monitoring ensured stability for the entire family and had a calming effect on healthy siblings. Home monitoring was seen as the system's greatest advantages, whereas size, weight, and functionality of the external monitoring equipment were highlighted as disadvantages. Discussion and conclusion: All parents supported the telemetric ICP sensor as a valued tool in treatment guidance of their child and stated that advantages exceeded disadvantages. It was stated that the possibility of conducting ICP measurements at home reduced the need for acute hospital admissions, which consequently led to a more stable daily life for the entire family. Suggestions regarding technical improvements with focus on more compatible external monitoring equipment were raised by all parents included.

Keywords

• Telemetric ICP monitoring
• Long-term ICP monitoring
• Paediatric hydrocephalus
• Paediatric CSF disorder
• Parent perception
• Child perception