Opinions on rehabilitation care of young adults with transversal upper limb reduction deficiency in their transition to adulthood.

PURPOSE: Young adults with transversal upper limb reduction deficiency experience limitations regarding education, employment and obtaining a driver's license. Contribution of rehabilitation care within these domains has been reported to be inadequate. This study evaluates the needs and suggestions of participants in rehabilitation care. METHODS: Two online focus groups with young adults and parents met during 4 consecutive days. Health care professionals joined a face-to-face focus group. Data analysis was based on framework analysis. RESULTS: The rehabilitation team was mainly consulted for problems with residual limb or for prostheses. Young adults and their parents were mostly unaware of resources regarding education, job selection or obtaining a driver's license. Professionals stated that these subjects were addressed during periodic appointments. Young adults didn't always attend these appointments due to limited perceived benefit. To improve rehabilitation care, participants suggested methods for providing relevant information, facilitating peer contact and offering dedicated training programs to practice work-related tasks, prepare for job interviews or enhance self-confidence. CONCLUSION: Periodic appointments do not fulfil needs of young adults with transversal upper limb reduction deficiency. To improve care, rehabilitation teams should offer age-relevant information, share peer stories, and create dedicated training programs.

Living with transversal upper limb reduction deficiency: limitations experienced by young adults during their transition to adulthood.

INTRODUCTION: During transition to adulthood young adults with disabilities are at risk of experiencing limitations due to changing physical and social requirements. PURPOSE: To determine whether young adults with transversal upper limb reduction deficiency (tULRD) have experienced limitations in various domains of participation during transition to adulthood and how they dealt with these limitations. PARTICIPANTS: Fifteen participants (mean age 21.4 years) with tULRD. METHODS: A qualitative study was performed using a semi-structured interview based on the Rotterdam Transition Profile to identify the limitations experienced in participation domains. RESULTS: Almost all the participants reported difficulties in finding a suitable study or job. Most young adults were convinced they were suitable for almost any study or job, but their teachers and potential employers were more reserved. Few difficulties were reported on the domains leisure activities, intimate relationships/sexuality, housing/housekeeping and transportation. Participants preferred to develop their own strategies for dealing with limitations. Various aids, adaptations and prostheses were used to overcome limitations. Rehabilitation teams were infrequently consulted for advice in solving transitional problems. CONCLUSION: Young adults with tULRD experience limitations mainly in choosing and finding a suitable study or job. Rehabilitation teams may play a more extensive role in supporting individuals with transitional problems. Implications for rehabilitation Most young adults with transversal upper limb reduction deficiency (tULRD) experience limitations in study and job selection during transition to adulthood, but they do not consult the rehabilitation team. Assessment of abilities in relation to job interests and practicing job specific bimanual activities may be helpful for young adults with a tULRD. How the rehabilitation teams can meet the needs of young adults with tULRD during transitional phases, when autonomy is of growing importance, should be investigated further.