Opinions of youngsters with congenital below-elbow deficiency, and those of their parents and professionals concerning prosthetic use and rehabilitation treatment.

BACKGROUND: Youngsters with unilateral congenital below-elbow deficiency (UCBED) seem to function well with or without a prosthesis. Reasons for rejecting prostheses have been reported earlier, but unfortunately not those of the children themselves. Furthermore, reasons for acceptance are underexplored in the literature. OBJECTIVES: To investigate opinions of children and early and late adolescents with UCBED, and those of their parents and healthcare professionals, concerning (1) reasons to wear or not to wear prostheses and (2) about rehabilitation care. METHODS: During one week of online focus group interviews, 42 children of 8-12 y/o, early and late adolescents of 13-16 and 17-20 y/o, 17 parents, and 19 healthcare professionals provided their opinions on various topics. This study addresses prosthetic use or non-use of prosthetics and rehabilitation care. Data were analyzed using the framework approach. RESULTS: Cosmesis was considered to be the prime factor for choosing and wearing a prosthesis, since this was deemed especially useful in avoiding stares from others. Although participants functioned well without prostheses, they agreed that it was an adjuvant in daily-life activities and sports. Weight and limited functionality constituted rejection reasons for a prosthesis. Children and adolescents who had accepted that they were different no longer needed the prosthesis to avoid being stared at. The majority of participants highly valued the peer-to-peer contact provided by the healthcare professionals. CONCLUSIONS: For children and adolescents with UCBED, prostheses appeared particularly important for social integration, but much less so for functionality. Peer-to-peer contact seemed to provide support during the process of achieving social integration and should be embedded in the healthcare process.

Activity and participation of children and adolescents with unilateral congenital below elbow deficiency: an online focus group study.

OBJECTIVE: To assess whether children/adolescents with unilateral congenital below elbow deficiency experience activity or participation limitations and how they deal with those limitations. METHODS: A qualitative study using online focus group interviews was held with 42 children/adolescents (in 3 age groups: 8-12, 13-16, and 17-20 years), 17 parents and 19 health professionals. Questions were posted concerning activities, participation, prosthetic use, psychosocial functioning, and rehabilitation care. This study concerns the first two topics; activities and participation. RESULTS: Children/adolescents experienced only a few limitations, and there were no activities or participation situations that were impossible. The limitations experienced could be attributed mainly to environmental factors, e.g. people who lack knowledge of the child's capacities. Those factors were particularly decisive in transition phases. Children/adolescents and parents described numerous strategies applied to deal with the deficiency. Professionals described fewer strategies and emphasized the use of adaptive devices and prostheses more than other participants did. CONCLUSION: Having unilateral congenital below elbow deficiency did not interfere with any activity, but not all children/adolescents had the ability to perform all activities. The strategies described by children/adolescents in managing their deficiency should be integrated into healthcare by providing realistic education about the various creative solutions and possibilities of adaptive devices and prostheses, and should be combined with specific training.

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

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.