Introduction: Children with chronic respiratory technology dependence (CRTD) are at increased risk for critical illness due to their underlying physiology, comorbid conditions, and device dependence. Home nursing allows these children to be cared for outside of the hospital, but this nursing care may be hard to access and have frequent gaps. Little is known about how these gaps may impact child and family functioning. Methods: Prospective, single-center, longitudinal study of critically ill children with CRTD. Families completed custom ecological momentary assessment (EMA) surveys up to 4x/day for the first week following hospital discharge and again for one week at 3, 6, and 9 months after discharge. EMA survey contents included real-time assessment of the child’s mood, energy, and respiratory support needs, as well as daily assessment for missed nursing shifts, parental stress, parental fatigue, and child sleep. Overall caregiver stress was measured using the PedsQL Family Impact Module (FIM) and Patient Health Questionnaire (PHQ-9). Linear mixed models were built to assess associations between missed nursing shifts and child and family outcomes. Results: Of 32 enrolled patients, 21 received home nursing following ICU discharge. 31 patients (21 with home nursing) had sufficient EMA data for analysis, primarily in the first week after discharge due to enrollment patterns. Families reported missed nursing shifts on 25.6% of queried days. Missed nursing shifts were associated with parental fatigue due to lack of sleep on the day following the missed shift (coeff 0.9559, p=0.029) and poor child sleep on the day of the missed shift (coeff 0.3966, p=0.002). Missed nursing shifts were not associated with parental worry about family events, parental worry about money, or parental physical discomfort as assessed by EMA. The percentage of queried days with missed nursing shifts was not associated with FIM or PHQ-9 at 3 months following hospital discharge (n=15). Conclusions: Missed home nursing shifts are associated with worse child sleep and increased parental fatigue following the missed shift in children with CRTD recovering from critical illness and their families. However, short- and long-term parental stress as measured by EMA questions, FIM, and PHQ-9 was not associated with missed nursing shifts.
Heneghan et al. (Sun,) studied this question.