Association between psychosocial barriers, family-centered care, and caregiver presence at the bedside in a pediatric post-acute care hospital: A qualitative study

Abstract

Purpose

Children with medical complexities are often in need of prolonged admissions to post-acute care hospitals. Caregiver presence at the bedside has been associated with improved outcomes for pediatric patients and caregivers. Ecological barriers have been found to impact caregiver presence at the bedside during pediatric admissions. While caregiver mood, coping, and family-centered care have been associated with caregiver presence in neonatal and pediatric intensive care units, less is known about post-acute admissions. The present qualitative study explored caregivers' psychosocial barriers to presence at the bedside and the role of family-centered care in a pediatric post-acute care hospital.

Design and methods

Semi-structured interviews were completed by a convenience sample of 10 self-identified caregivers of children admitted to post-acute care. Data was analyzed through a deductive content analysis process.

Results

Four key themes emerged: ecological barriers to caregiver presence at the bedside, leading to difficult decision-making needs; pediatric admissions and decision-making impact caregiver mood; utilization of meaning-centered, action-oriented, and social coping; and family-centered care as a facilitator of presence and reduction of burden.

Conclusions

Barriers to presence at the bedside seem to increase existing caregiver distress and burden. The role of family-centered care, namely hospital support and caregiver-staff collaboration, serves as a moderator between psychosocial barriers and presence at the bedside.

Practice implications

Targeted training in family-centered care for nurses and other providers involved in the day-to-day management of patients and caregivers is warranted to increase visitation rates and improve the mental health of caregivers during pediatric post-acute care admissions.