Mapping the Home-Care Experiences of Parents of Preterm Infants With Bronchopulmonary Dysplasia Receiving Home Oxygen Therapy: A Descriptive Qualitative Study

Background Bronchopulmonary dysplasia (BPD) remains one of the most common and burdensome complications of prematurity. Although home oxygen therapy (HOT) has become an increasingly standard component of post-discharge care for preterm infants with BPD. Little is known about how parents navigate the transition from hospital monitoring to independent home caregiving. how parents experience this caregiving trajectory and where nursing support is most needed across different stages of home care.This study aimed to develop a journey map of parents’ home-care experiences while caring for preterm infants with BPD receiving HOT, to identify stage-specific care needs and inform the refinement of discharge preparation and transitional care services. Methods A descriptive qualitative study was conducted using semi-structured interviews with 21 parents of preterm infants with BPD receiving HOT in a tertiary children’s hospital in Chongqing, China. Interviews were held by telephone or face to face. Data were analyzed using directed content analysis guided by a provisional journey-map framework. COREQ guidelines informed the study's design and reporting. Results Parents’ experiences were organized into four stages: discharge preparation, home transition, oxygen-therapy adaptation, and oxygen-weaning adjustment. Caregiving tasks shifted from learning oxygen-related knowledge and skills, preparing equipment and the home environment, and acquiring emergency-care skills to independently monitoring oxygen saturation, coordinating oxygen use with feeding, preventing infection, attending follow-up visits, supporting rehabilitation, and managing oxygen weaning. Emotional experiences included expectation, uncertainty, hypervigilance, sleep disruption, fatigue, social restriction, increasing confidence, and continuing concerns about oxygen discontinuation, recurrent illness, and long-term development. Major pain points included information overload, difficulty interpreting oxygen saturation changes and warning signs, feeding and growth problems, unclear oxygen-weaning criteria, limited access to timely professional support, travel burden for specialist follow-up, and sustained family caregiving pressure. Conclusions Journey mapping revealed stage-specific caregiving tasks, emotional experiences, and unmet support needs among parents of preterm infants with BPD receiving HOT. These findings highlight the need for continuous, nurse-led, family-centered transitional care that extends beyond discharge education and provides individualized support throughout home oxygen management and oxygen weaning. Clinical trial number Not applicable.