"This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy

Abstract

Rationale: Expansion of chronic ventilation options and shared decision-making have contributed to an increasing population of technology-dependent children. One particularly vulnerable group is children with tracheostomy who depend on technology for basic respiratory functions. Chronic critical care is now provided in the homecare setting with implications for family caregivers.Objectives: This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. We sought to identify the specific unmet needs of families to direct future interventions.Methods: We recruited a convenience sample of families from an established home ventilation program to participate in semistructured interviews. Sessions were conducted in person or via teleconference. A grounded-theory qualitative analysis was performed.Results: Between March 2017 and October 2018, we interviewed 13 individuals representing 12 families of children and/or young adults with tracheostomy. Patients ranged in age from 9 months to 28 years, had a tracheostomy for 8 months to 18 years, and represented a variety of underlying diagnoses. Five key themes emerged: 1) navigating home nursing; 2) care coordination and durable medical equipment (DME) impediments; 3) learning as a process; 4) managing emergencies; and 5) setting expectations.Conclusions: Our findings support the need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.

Keywords: experience; family; home care; qualitative; tracheostomy.

Figure 1.

Reconstruction of discharge experience, challenges, and potential solutions. This timeline is constructed from participant interviews representing the transitional experience of families (triple line light blue box) from before tracheostomy to after discharge home. Parallel durable medical equipment (DME) and home nursing timelines are depicted (single lines) that do not optimally align with the family timeline. In particular, delays in approval and filling of nursing hours, as well as the timing of DME delivery just before—or coincident with—discharge contribute to family stress. Green boxes represent opportunities to address barriers to successful transition home, including initial counseling, graded exposure to homecare, approaches to caregiver training, and communication with multiple providers. Improved remote access to the electronic health record (including summary medical history, recent diagnostics, and clear contacts for specific condition and medication questions) for families, home care, and community providers has the potential to decrease information loss and the need for work-arounds. CPR = cardiopulmonary resuscitation; RN = registered nurse; RT = respiratory therapist.