Experiences of caregivers of twins with bronchopulmonary dysplasia and retinopathy of prematurity: a phenomenological study
DOI:
https://doi.org/10.15649/cuidarte.5386Keywords:
Twins, Premature Birth, Retinopathy of Prematurity, Bronchopulmonary Dysplasia, CaregiversAbstract
Highlights
- Caring for premature twins with chronic conditions reshapes family dynamics, requiring the reorganization of roles, time, and financial resources to ensure continuity of care at home.
- The Kangaroo Mother Care program is a key resource for strengthening parent–infant bonding and caregiving competence; however, it requires specific adaptations for premature twin cases.
- The emotional impact on caregivers of premature twins is characterized by fear, uncertainty, and guilt, shaped by the quality of professional and family support received.
- Barriers to accessing specialized services, along with the cost of care, increase the social and economic vulnerability of these families, underscoring the need for inclusive and responsive public policies.
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.
How to cite this article: Guevara Suta Sonia Esperanza, Casallas Hernández Nathalya, Monroy Garzón Adriana Marcela, Narváez-Rumié Olivia Margarita, Caraballo-Martínez Gilma Jeannette, López-Cruz Ruth Liliana. Experiences of caregivers of twins with bronchopulmonary dysplasia and retinopathy of prematurity: a phenomenological study. Revista Cuidarte. 2026;17(2):e5386. https://doi.org/10.15649/cuidarte.5386
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