Mixed feelings of children and adolescents with unilateral congenital below elbow deficiency: an online focus group study

• Published in: PloS one Vol. 7; no. 6; p. e37099
• Main Authors: de Jong, Ingrid G M, Reinders-Messelink, Heleen A, Janssen, Wim G M, Poelma, Margriet J, van Wijk, Iris, van der Sluis, Corry K
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 08-06-2012; Public Library of Science (PLoS)
• Subjects: Adjustment; Adolescent; Adolescents; Adult; Age; Artificial Limbs; Biology; Body composition; Cerebral palsy; Child; Child development; Children; Children & youth; Comparative analysis; Data analysis; Diabetes; Elbow; Elbow (anatomy); Elbow - abnormalities; Emotions; Families & family life; Female; Focus groups; Gender; Genetic disorders; Humans; Internet; Male; Medical personnel; Medicine; Parents; Parents & parenting; Participation; Peers; Perceptions; Prostheses; Prostheses and implants; Qualitative research; Quality of life; Rehabilitation; Self esteem; Self image; Social and Behavioral Sciences; Social interactions; Studies; Teenagers; Upper Extremity Deformities, Congenital - psychology; Upper Extremity Deformities, Congenital - rehabilitation; Netherlands
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0037099

The existing literature is inconsistent about the psychosocial functioning of children and adolescents with Unilateral Congenital Below Elbow Deficiency (UCBED). The objective of this qualitative study was to explore the psychosocial functioning of children and adolescents with UCBED in terms of their feelings about the deficiency and what helps them to cope with those feelings. Additionally, the perspectives of prosthesis wearers and non-wearers were compared, as were the perspectives of children, adolescents, parents and health professionals. Online focus group interviews were carried out with 42 children and adolescents (aged 8-12, 13-16 and 17-20), 16 parents and 19 health professionals. Questions were asked about psychosocial functioning, activities, participation, prosthetic use or non-use, and rehabilitation care. This study concerned remarks about psychosocial functioning. Children and adolescents with UCBED had mixed feelings about their deficiency. Both negative and positive feelings were often felt simultaneously and mainly depended on the way people in the children's environment reacted to the deficiency. People staring affected the children negatively, while support from others helped them to cope with the deficiency. Wearing a prosthesis and peer-to-peer contact were also helpful. Non-wearers tended to be more resilient than prosthesis wearers. Wearers wore their prosthesis for cosmetic reasons and to prevent them from negative reactions from the environment. We recommend that rehabilitation teams make parents aware of their great influence on the psychosocial functioning of their child with UCBED, to adjust or extend the currently available psychosocial help, and to encourage peer-to-peer contact.