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.