Management of the neurogenic bladder is variable, complex, and often requires a demanding
bladder care regimen which may present caregiver burdens that are unique among chronic
disease. While research into patient quality of life is increasing, parallel study
of the caregiver experience is scant. Existing research primarily comprises survey
data using validated instruments originally developed for non-urologic conditions,
such as dementia. These surveys may detect high caregiver burden and decreased quality
of life amongst caregivers but are limited in their ability to understand the underlying
To characterize the experience of those caring for children with neurogenic bladders,
with a focus on unexpected burdens and challenges.
In light of limited existing research, a qualitative research methodology was selected
to explore the caregiver experience. Semi-structured phone interviews were conducted
with primary caregivers of children with neurogenic bladder, all of whom were patients
in the pediatric urology department of a single tertiary pediatric referral center.
Purposive sampling was used to ensure diverse representation. Interviews were recorded,
transcribed, and professionally translated if needed. Transcripts were analyzed using
a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software.
Member-checking focus groups were held to validate the results.
Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point
thematic saturation was reached. Three primary themes emerged surrounding the topic
of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization
and supplies, 3. Urinary tract infections. Member-checking focus groups validated
the thematic analysis and provided additional insights into mitigating factors for
these challenges. A child's independence with his or her health care regimen was cited
as particularly important for decreasing caregiver burden.
Caregivers of children with neurogenic bladder report their role is more difficult
than they anticipated it would be. Catheterization represents a particularly burdensome
task, and recurrent infections are an unexpected and persistent medical challenge.
Understanding unexpected challenges that caregivers face will help pediatric urologists
target modifiable factors to decrease caregiver burden, address current gaps in counseling
and expectation-setting, and set the stage for more complete shared decision-making.
This study represents an initial qualitative characterization of the experience caring
for a child with neurogenic bladder. This is a key first step in understanding how
caregivers make decisions for their children and their families. This initial study
is foundational to a larger project to create a decision aid for caregivers of children
with neurogenic bladder.