Caregivers experiences in symptom management for their children who require medical technology at home

The purpose of this study is to explore the daily care experiences of caregivers of children who require medical technology. Specific aims were to gain an understanding of their perceptions of (a) how caregivers manage symptoms for their children who require medical technology at home, (b) why the caregivers seek emergency department (ED) and hospital care, and (c) what the caregivers need to manage their child's symptoms at home. The research question was asked, what are the education, skills, and support caregivers report needing to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations?

Interpretive phenomenology was used to examine how caregivers manage their children's symptoms and technology at home, and their reasons for seeking emergency care through ED visits and/or hospitalizations. Self-identified nine primary caregivers of children who required medical technology participated in this study. Semi-structured interviews explored the caregiver's perceptions of the child's needs for symptom and technology management, and needs for education, skills, and support.

Three themes were found in the participant interviews. Theme 1 was Knowing my child's normal and having confidence with daily caregiving. Theme 1 included a subtheme of Caregivers are proactive and advocates for their child. Theme 2 was This is much different from my child's normal…this is an emergency. Theme 3 was We cannot sleep and we are exhausted. In regard to education, skills, and support, caregivers described their preparation and training in the hospital before their child's discharge from the hospital with a tracheostomy and feeding tube, but lacked knowledge of new situations and symptoms at home with medical technology.

This study confirms the need for interventions for these caregivers to enhance education, skills, and support caregivers need to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations, specifically enhancement of care at home. More education for caregivers of children who require medical technology is recommended to facilitate quality care for the child; few interventions have addressed care for these children, and none address education and management of symptoms and medical technology.