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Coping strategies used by children and adolescents born with esophageal atresia - a focus group study obtaining the child and parent perspective

Journal article
Authors Michaela Dellenmark-Blom
John Chaplin
Linus Jönsson
Vladimir Gatzinsky
J. H. Quitmann
Kate Abrahamsson
Published in Child Care Health and Development
Volume 42
Issue 5
Pages 759-767
ISSN 0305-1862
Publication year 2016
Published at Institute of Clinical Sciences, Department of Pediatrics
Pages 759-767
Language en
Keywords congenital malformation, coping, esophageal atresia, focus group, psychosocial aspects, rare, QUALITY-OF-LIFE, CHRONIC DISEASE, FOLLOW-UP, CHRONIC ILLNESS, TRACHEOESOPHAGEAL FISTULA, THE-LITERATURE, QUESTIONNAIRE, ADULTS, CARE, RECOMMENDATIONS
Subject categories Pediatrics


BackgroundEsophageal 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. MethodsStandardized 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. ResultsThirty families (18 children 8-17years; 32 parents of children with EA 2-17years) 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). ConclusionsFocus 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.

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