Amy L D'Agata1, Michelle Kelly2, Carol E Green3, Mary C Sullivan4. 1. University of Rhode Island, College of Nursing, 350 Eddy Street, Providence, RI 02903, United States of America. Electronic address: amydagata@uri.edu. 2. University of Rhode Island, College of Nursing, 350 Eddy Street, Providence, RI 02903, United States of America; Villanova University, Fitzpatrick College of Nursing, 800 E. Lancaster Avenue, Villanova, PA 19085, United States of America. 3. Department of Family Medicine, Brown University, Alpert School of Medicine, 111 Brewster Street, Pawtucket, RI 02860, United States of America. 4. University of Rhode Island, College of Nursing, 350 Eddy Street, Providence, RI 02903, United States of America.
Abstract
BACKGROUND: Tremendous medical advancements over the last several decades have supported the survival of younger and sicker newborns. Substantial quantitative research exists about health and developmental outcomes following preterm birth, however, limited published literature has explored what this experience means to the survivors. AIM: The purpose was to describe, interpret and understand how adults born preterm perceive prematurity to have affected their lives. STUDY DESIGN: Qualitative thematic analysis. METHODS: Semi-structured interviews were conducted with 33 adults born preterm from the RHODĒ Study, a longitudinal preterm birth cohort. A cross-section of participants with high and low early life medical and environmental risk was interviewed. Data were analyzed using a constructionist method of latent theme analysis. RESULTS: From the data, 3 themes were identified: 1) My parents call me their miracle, 2) It's not a big deal, I'm the same as everyone else, 3) I've overcome a lot. Themes represent a continuum of experience, from positive to neutral to negative. Common life experiences of family, education, friends, and health are subthemes that help to illuminate how participants assign meaning to their prematurity. Meaning was linked to how typical or not participants perceive their health, learning and friends compared to peers. CONCLUSION: Perceptions about prematurity and adversity are influenced by the ways parents and families represent prematurity in shared stories and actions. These findings should inform future research with adult survivors of prematurity. Participants identified ongoing need for support and advocacy, particularly from healthcare and education communities.
BACKGROUND: Tremendous medical advancements over the last several decades have supported the survival of younger and sicker newborns. Substantial quantitative research exists about health and developmental outcomes following preterm birth, however, limited published literature has explored what this experience means to the survivors. AIM: The purpose was to describe, interpret and understand how adults born preterm perceive prematurity to have affected their lives. STUDY DESIGN: Qualitative thematic analysis. METHODS: Semi-structured interviews were conducted with 33 adults born preterm from the RHODĒ Study, a longitudinal preterm birth cohort. A cross-section of participants with high and low early life medical and environmental risk was interviewed. Data were analyzed using a constructionist method of latent theme analysis. RESULTS: From the data, 3 themes were identified: 1) My parents call me their miracle, 2) It's not a big deal, I'm the same as everyone else, 3) I've overcome a lot. Themes represent a continuum of experience, from positive to neutral to negative. Common life experiences of family, education, friends, and health are subthemes that help to illuminate how participants assign meaning to their prematurity. Meaning was linked to how typical or not participants perceive their health, learning and friends compared to peers. CONCLUSION: Perceptions about prematurity and adversity are influenced by the ways parents and families represent prematurity in shared stories and actions. These findings should inform future research with adult survivors of prematurity. Participants identified ongoing need for support and advocacy, particularly from healthcare and education communities.
Authors: Lynn T Singer; Sarah Fulton; H Lester Kirchner; Sheri Eisengart; Barbara Lewis; Elizabeth Short; Meeyoung O Min; Sudtida Satayathum; Carolyn Kercsmar; Jill E Baley Journal: Arch Pediatr Adolesc Med Date: 2010-06