Authors: Katie Barnes, MD
Hydrocephalus has an inherent nature of unpredictability. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a childs shunt will fail and require emergency surgery. We have previously shown that children with hydrocephalus and their caregivers experience significant post-traumatic stress symptoms secondary to their diagnosis. This study aims to understand themes in caregiver experiences, identify gaps in resources/support, and determine opportunities to improve care.Methods: We conducted semi-structured interviews with caregivers of children with hydrocephalus to learn about their experiences with hydrocephalus diagnosis, hospitalizations, and surgeries; coping and support; challenges of caring for a child with hydrocephalus; and logistics for a proposed support program. A single researcher conducted the interviews after obtaining informed consent. They were audio-recorded, transcribed, and analyzed using an inductive thematic analysis with NVivo 12.6 Plus software. Two researchers independently coded all transcripts with regular input from the research team.
Seventeen interviews were completed. Three major themes emerged: Information, Coping, and Resources/Support. Most participants (88%) had no prior knowledge about hydrocephalus. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the childs life. Caregivers described a variety of coping strategies, but majority reported a need for support in processing complex emotions and dealing with the uncertainty of their childs hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would be critical to feeling supported and providing the best care for their children.
Caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip caregivers to be advocates for their children and to improve quality of life.