title: Coping strategies used by children and adolescents born with esophageal atresia - a focus group study obtaining the child and parent perspective.
abstract: Esophageal atresia (EA) is a rare malformation, which requires surgical treatment. Survival rates today reach 95%, but EA remains a significant cause of chronic morbidity with increased risk of psychosocial problems and impaired health-related quality of life (HRQOL). No study of coping strategies of children with EA has been reported in the literature to date, but increased knowledge could lead to improved outcomes and better HRQOL.
  
  
  
  Standardized focus groups with children with EA and their parents were conducted to identify issues related to health care needs and HRQOL, with group members relating their coping experiences. Identified coping statements were content analysed using a card sorting procedure and descriptive statistics.
  
  
  
  Thirty families (18 children 8-17 years; 32 parents of children with EA 2-17 years) participated in 10 focus groups. A total of 590 coping statements were recorded. Nine coping strategies were identified: problem solving (n = 116), avoidance (n = 95), recognizing responsibility (n = 71), confronting (n = 70), seeking social support (n = 63), positive reappraisal (n = 58), emotional expression (n = 46), acceptance (n = 40) and distancing (n = 31). Nine situational contexts were identified: nutritional intake (n = 227), communication of one's health condition (n = 78), self-perception when experiencing troublesome symptoms (n = 59), appearance of body or scar(s) (n = 57), physical activities like sport and play (n = 43), sleep (n = 34), hospital care (n = 33), stigmatization and social exclusion (n = 30) and medication intake (n = 29).
  
  
  
  Focus group methodology contributed to an increased understanding of disease-specific coping processes among children and adolescence with EA. Findings illustrate that they use several coping strategies, some of which they seem to adopt at early age and use in disease-related contexts of physical, social and emotional character. Such coping may influence health and HRQOL in children with EA. In view of the importance of establishing good coping strategies early in life, health care professionals should integrate coping aspects into care management. Future studies are warranted.
authors.affiliation: Institute of Clinical Sciences Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
authors.forename: M
authors.initials: M
authors.lastname: Dellenmark-Blom
authors.affiliation: Institute of Clinical Sciences Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
authors.forename: J E
authors.initials: JE
authors.lastname: Chaplin
authors.affiliation: Department of Pediatric Surgery Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
authors.forename: L
authors.initials: L
authors.lastname: Jönsson
authors.affiliation: Department of Pediatric Surgery Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
authors.forename: V
authors.initials: V
authors.lastname: Gatzinsky
authors.affiliation: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: J H
authors.initials: JH
authors.lastname: Quitmann
authors.affiliation: Institute of Clinical Sciences Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, Gothenburg, Sweden.|Department of Pediatric Surgery Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.
authors.forename: K
authors.initials: K
authors.lastname: Abrahamsson
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D004933:Esophageal Atresia / Q000523:psychology* / Q000534:rehabilitation / Q000601:surgery*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010290:Parents / Q000523:psychology; D011340:Problem Solving; D012944:Social Support
keywords: congenital malformation; coping; esophageal atresia; focus group; psychosocial aspects; rare condition