Quality of Life Outcomes in Primary Caregivers of Children with Esophageal Atresia.

OBJECTIVE: To investigate the quality of life (QoL) impact on primary caregivers of children with esophageal atresia. STUDY DESIGN: We used a prospective cohort study design, inviting primary caregivers of children with esophageal atresia to complete the following questionnaires: Parent Experience of Child Illness (PECI), Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, PROMIS Depression, 12-Item Short Form Survey (SF-12), and Pediatric Quality of Life Inventory (PedsQL). The PECI, PROMIS Anxiety and Depression, and SF-12 assessed caregiver QoL, and the PedsQL assessed patient QoL. Patients with Gross type E esophageal atresia served as controls. RESULTS: The primary caregivers of 100 patients (64 males, 36 females; median age, 4.6 years; range, 3.5 months to 19.0 years) completed questionnaires. The majority (76 of 100) of patients had Gross type C esophageal atresia. A VACTERL (vertebral anomalies, anorectal malformation, cardiac anomalies, tracheoesophageal fistula, renal anomalies, limb anomalies) association was found in 30, ≥1 esophageal dilatation was performed in 57, and fundoplication was performed in 11/100. When stratified by esophageal atresia types, significant differences were found in 2 PECI subscales (unresolved sorrow/anger, P = .02; uncertainty, P = .02), in PROMIS Anxiety (P = .02), and in SF-12 mental health (P = .02) and mental component summary scores (P = .02). No significant differences were found for VACTERL association, nor esophageal dilatation. Requirement for fundoplication resulted in lower SF-12 general health score, and lower PedsQL social and physical functioning scores. CONCLUSIONS: We have demonstrated that caring for a child with esophageal atresia and a previous requirement for fundoplication impacts caregiver QoL.

Mother's Lived Experience During Repair of Long-Gap Esophageal Atresia: A Phenomenological Inquiry.

BACKGROUND: Infants born with long-gap esophageal atresia (LGEA) pose unique physiologic risks in the newborn period. Anatomic and physiologic anomalies require an extended hospitalization with procedural analgesia and sedation that impact the mother's experience of birth, maternal response, and nurturing of her infant. PURPOSE: The aim of this study was to understand the meaning of experiences that mothers of infants born with LGEA encounter in the neonatal intensive care unit while their infant undergoes esophageal repair. METHODS: A hermeneutical phenomenological design was used to guide this inquiry. Three mothers were interviewed on 3 separate occasions. The conversations were audio-recorded and transcribed verbatim. The findings were analyzed using fundamental existential lifeworld themes. RESULTS: The essence that conceptualized the study was "making connections: day-by-day." Themes that emerged are (a) the many phases; (b) the long and winding road; (c) a new me, my purpose; and (d) our new community. IMPLICATIONS FOR PRACTICE: Nurses' knowledge and understanding of maternal experiences of having an infant with LGEA will enable for increased physical closeness, optimizing time spent together to learn their infant's unique personality. Creating partnerships with mothers can enhance our understanding of their perspectives, concerns, needs, and guide interventions. IMPLICATIONS FOR RESEARCH: Further exploration of family dynamics including fathers, siblings, and contextual factors may illuminate interventions to enhance relationships and communication that may influence developmental outcomes for families of infants with LGEA.

Can 'long-gap' esophageal atresia be safely managed at home while awaiting anastomosis?

BACKGROUND: Neonates with "long gap" esophageal atresia (EA) are often managed with gastrostomy and tube drainage of the proximal pouch for a number of months while awaiting definitive repair. Because of the risk of aspiration and need for complex nursing care, most remain hospitalized during this time. However, prolonged hospitalization utilizes scarce resources and may be difficult for many families. METHODS: The authors report on 5 patients who were treated successfully at home while awaiting esophageal anastomosis. RESULTS: Four patients had pure EA (one had a duodenal atresia), and one had a distal fistula. Gestational ages ranged from 31 to 41 weeks. All had a gastrostomy within days of birth. Age at definitive repair ranged from 6 to 12 months. Time at home while awaiting anastomosis ranged from 42 to 113 days. Care at home included nursing care, suction equipment and training, gastrostomy feeding, and ability to perform cardiopulmonary resuscitation. The only complications noted while at home consisted of ear infection in one patient and recurrent upper respiratory tract infections in another patient. CONCLUSIONS: Selected patients with long gap esophageal atresia can be treated safely at home while awaiting esophageal anastomosis. Success of this approach depends on a motivated, reliable family, and adequate support from community health care providers.

Long-gap oesophageal atresia: a nursing perspective.

Oesophageal atresia (OA) is a congenital anomaly in which the oesophagus ends in a blind upper pouch. Specialised family-centred nursing care is required for the neonate/infant with 'long-gap' OA. Goals of preoperative nursing care focus on prevention of aspiration, optimising nutrition and thus growth of the baby and supporting parents. Primary repair is delayed to enable further growth of the infant and additional oesophageal growth. Additional nursing and medical research needs to be undertaken in a number of areas relating to the management of infants with long-gap OA.

Surgical intervention for oesophageal atresia with tracheo-oesophageal fistula.

1. This condition is a congenital condition occurring in 1:3,500 births. 2. The condition can be diagnosed in utero, then delivery can be arranged at a hospital with a neonatal unit. 3. Most cases can be easily treated with surgical intervention. 4. Most TOF babies thrive after surgery, and good nursing care increases their chances of healthy development.

Nursing perspectives in the management of infants and children requiring thoracic surgery.

Nurses who care for infants and children undergoing thoracic surgery must function and make decisions which take into account a multiplicity of complex data. This necessitates a background of knowledge, skill and intuition which guides their nursing practice. The principles of holistic care in which the total needs of the infant and child are met within the context of the family are seen as an important approach to patient care. Selected perspectives in the care of infants with congenital and acquired thoracic anomalies are discussed, in particular infants with congenital diaphragmatic hernia and oesophageal atresia. The preparation of children for chest surgery and the postoperative nursing management are outlined and include aspects of pain management, physiotherapy and chest drain care.