Experiences of caregivers of twins with bronchopulmonary dysplasia and retinopathy of prematurity: a phenomenological study.

INTRODUCTION

The premature birth of twins with bronchopulmonary dysplasia and/or retinopathy of prematurity represents an emotional, social, and financial challenge for families.

OBJECTIVE

To understand the lived experiences of caregivers of premature twins diagnosed with bronchopulmonary dysplasia and retinopathy of prematurity in a Kangaroo Mother Care program in Bogotá, Colombia.

MATERIALS AND

METHODS

A phenomenological study was conducted with seven caregivers of premature twins enrolled in a Kangaroo Mother Care program between 2020 and 2022. Virtual semi-structured interviews were transcribed and analyzed using content analysis, identifying thematic categories such as emotional experiences, access to health services, and family reorganization. Ethical considerations and confidentiality were ensured.

RESULTS

Three main categories emerged: emotional experience, caregiving challenges, and socioeconomic impact. The latter included reconfiguring family roles, financial burden, and coping strategies such as community support.

DISCUSSION: The experience of caregivers of premature twins with chronic conditions reveals a multidimensional burden that calls for comprehensive, family-centered care models with ongoing interdisciplinary support and public policies that strengthen the resilience and sustainability of caregiving.

CONCLUSION

The importance of an interdisciplinary, family-centered, and humanized approach to neonatal care is emphasized. Future research should expand the sample and explore targeted interventions for this population.