Caring for Preterm Infants on Home Oxygen: A Descriptive Qualitative Study of Caregivers' Experiences in Belgium.

BACKGROUND

In the Flemish part of Belgium, preterm births and NICU admissions for acute lung diseases have increased. Nearly half of extremely preterm infants develop bronchopulmonary dysplasia (BPD), requiring prolonged oxygen therapy. Oxygen dependency often delays hospital discharge, leading to more infants going home with oxygen. Caregivers, especially mothers, face significant stress and emotional challenges during this transition, worsened by social isolation due to infection fears.

PURPOSE: To gain a clearer understanding of caregivers' experiences caring for oxygen-dependent infants at home after discharge.

METHOD: Caregivers of infants discharged home on oxygen from the University Hospital Brussels (UZB) between January 2019 and December 2023 participated in semistructured, nurse-administered interviews.

RESULTS

Thirteen caregivers participated. Caregivers adapted to complex care routines, use of medical equipment, and shared caring responsibilities. Fear of infections led to parental preventive behaviors that reduced social contacts and increased feelings of isolation, particularly during high-risk viral seasons. Changed family dynamics included disrupted sleep and altered household roles. Despite difficulties, many caregivers stated their shared caregiving strengthened family bonds. Emotional and financial challenges such as income loss and expenses were frequently voiced.

IMPLICATIONS FOR PRACTICE AND RESEARCH: These findings highlight the need for comprehensive ongoing support from healthcare providers (in hospital and at home) to address the medical and psychosocial needs to reduce parental stress and social isolation and that assist families adapt to life at home caring for their infant on oxygen.