Researcher Alejandra Pérez, a nursing professional affiliated with the Sant Pau Research Institute (IR Sant Pau), has been awarded a grant from the Official College of Nurses of Barcelona (COIB) to develop a research project focused on the assessment of quality of life in premature infants or those with low birth weight for gestational age, as well as that of their families, enrolled in the Neonatal Home Care Program (PADN).
The main objective of the project is to design and validate a specific scale that allows for rigorous measurement of quality of life in this care setting, a key dimension for assessing the real impact of care beyond traditional clinical indicators. At present, there are no validated instruments specifically designed to assess the quality of life of these infants during home follow-up after hospital discharge.
“Neonatal home care has demonstrated clear clinical benefits, but we still have very few tools that allow us to assess how infants and their families experience this stage,” explains Alejandra Pérez. “Having a validated scale will help us systematically incorporate quality of life as a relevant indicator in the evaluation of these programs and in the improvement of care.”
The research is structured in several complementary phases. First, a systematic review of the scientific literature will be conducted to identify the components that define the quality-of-life construct in premature infants and those with low birth weight. The project will then incorporate a qualitative study with a phenomenological approach, based on in-depth interviews with families enrolled in the PADN, with the aim of exploring their experiences and perceptions regarding their children’s quality of life and the family environment.
Based on these findings, the scale will be designed and subsequently undergo psychometric validation, involving expert participation and statistical analysis of its reliability and validity. This process will result in a specific, robust tool applicable to clinical practice, aimed at improving the assessment and follow-up of infants cared for in neonatal home hospitalization programs.
The project involves a research team composed primarily of nursing professionals, with the participation of neonatology specialists, and it addresses ethical and confidentiality aspects transversally, with the corresponding review by a research ethics committee. It also includes a detailed work plan and a dissemination strategy designed to facilitate the transfer of results to both clinical practice and the scientific community.
The awarding of this grant strengthens the role of nursing research at IR Sant Pau and its commitment to projects that place patients and their families at the center of health care, promoting a more comprehensive and humanized evaluation of care.
