Parent-to-Parent Coaching for Parents of Children Requiring Invasive Mechanical Ventilation with Incomplete Home Health Nursing Teams

Vollständiger Abstract

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Parents of children requiring invasive home mechanical ventilation (IMV) rely on, and are expected to manage, complex home health nursing care teams. However, ubiquitous shortages in the pediatric home healthcare workforce leave most families with incomplete nursing support, with negative impacts on child and family well-being. Parents report feeling stressed, overwhelmed, and unsupported by community healthcare services. Parent-to-parent support programs in other populations of children with disabilities have been shown to embolden parents with practical solutions, emotional support, and social connectedness. We designed a novel parent-to-parent coaching model for parents of children with IMV who did not have established home health nursing to empower parents to expand and manage new home health nursing teams. Ten mothers of children awaiting hospital discharge or home without complete nursing support were recruited through a state-wide program. Mothers participated in telephone coaching sessions with experienced family caregivers that included topics related to establishing and managing home health teams and preparing the home for home health nursing. Families were in the program on average 6 months with a median of 11.5 calls with their coach. At the study exit, the majority of families expanded nursing staff and had their child in the family home with the support of home health nursing. Two themes were identified in exit interviews: (1) mothers appreciated specific resources shared by coaches and (2) mothers felt grateful for the emotional support coaches provided, including sharing common experiences and feeling validated. Parents reported that coaches provided unique education and support not provided through existing systems. Parent-to-parent coaching for families of children with IMV may potentially help to reduce home health nursing gaps while also empowering and supporting socially-isolated parents.