LAUSR

Abstract Purpose: The aim of the study was to explore patients’ long-term experience of a congenital hand problem, and the consequences for daily life. Method: Fifteen participants with a median age 24 years (17–55 years), born with thumb hypoplasia/aplasia or thumb duplication were interviewed using a semi-structured interview guide. The interviews were subjected to qualitative content analysis. Results: Although the mobility and strength in the thumb/hand(s) varied within the group, hand function was generally described as good. Compensatory strategies were used to overcome practical obstacles. The emotional reactions to being visibly different from peers in early life varied from total acceptance and a sense of pride in being special, to deep distress and social withdrawal. Support from parents, teachers and others was important in facing emotional challenges and practical consequences. Conclusion: The present study highlights the importance of healthcare professionals addressing appearance-related concerns which may have long-term emotional and social consequences for patients born with a thumb anomaly. Implications for Rehabilitation Appearance-related concerns and need for emotional support should be fully considered throughout the rehabilitation process to prevent distress and social withdrawal. Effective problem-solving strategies, such as compensation, change in occupational performance and support from others may reduce activity limitations and participation restriction.