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

TY - JOUR

T1 - Coping strategies used by children and adolescents born with esophageal atresia - a focus group study obtaining the child and parent perspective

AU - Dellenmark-Blom, M

AU - Chaplin, J E

AU - Jönsson, L

AU - Gatzinsky, V

AU - Quitmann, J H

AU - Abrahamsson, K

N1 - © 2016 John Wiley & Sons Ltd.

PY - 2016/9

Y1 - 2016/9

N2 - BACKGROUND: 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.METHODS: 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.RESULTS: 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).CONCLUSIONS: 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.

AB - BACKGROUND: 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.METHODS: 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.RESULTS: 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).CONCLUSIONS: 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.

KW - Adaptation, Psychological

KW - Adolescent

KW - Adult

KW - Attitude to Health

KW - Child

KW - Child, Preschool

KW - Esophageal Atresia/psychology

KW - Female

KW - Focus Groups

KW - Humans

KW - Infant

KW - Infant, Newborn

KW - Male

KW - Middle Aged

KW - Needs Assessment

KW - Parents/psychology

KW - Problem Solving

KW - Social Support

U2 - 10.1111/cch.12372

DO - 10.1111/cch.12372

M3 - SCORING: Journal article

C2 - 27469614

VL - 42

SP - 759

EP - 767

JO - CHILD CARE HLTH DEV

JF - CHILD CARE HLTH DEV

SN - 0305-1862

IS - 5

ER -