Congenital thumb anomalies and the consequences for daily life: patients’ long-term experience after corrective surgery. A qualitative study

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.

Keywords:

• Thumb hypoplasia/aplasia
• thumb duplication
• pollicisation
• hand disfigurement
• adaptation
• qualitative research

Acknowledgements

The authors particularly thank the patients who shared their narratives.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Funding

The study was supported by grants from the Swedish Medical Research Council, Lund University, Region Skåne, i.e. ALF-grants; Health-Care Academy at Skane University Hospital; HKH Kronprinsessan Lovisas Förening för Barnsjukvård; Fanny Ekdahls Stiftelse för Pediatrisk Forskning; Kockska Stiftelsen and Svenska Läkaresällskapets fonder.