Experience of Participation as Described by People with Hand Deformity Caused by Rheumatic Disease

Abstract

Objective:

Participation as a concept has come into focus as an important aspect of wellbeing and derives from the International Classification of Functioning, Disability and Health. This qualitative study aimed to increase understanding of how hand deformities caused by rheumatic disease influence the individual's potential to continue participating in society by taking into account other people's attitudes.

Method:

Interviews were carried out with 11 participants with hand deformity associated with a rheumatic disease. Analyses were conducted using comparative methodology and hermeneutic interpretation.

Findings:

Participation was described as an experience that arises during involvement in an activity or a social context. All the participants experienced restricted participation across a variety of situations. Hand deformity, combined with physical environment, personal attributes and the attitudes of others, was an obstacle to the achievement of full participation. It also became obvious that the participants were not able to consider only the impact of hand deformity without acknowledging other consequences of their rheumatic condition.

Conclusion:

Personal and contextual factors intertwine and influence the lived experience of participation and the ability to participate. A perspective in rehabilitation that addresses only functions or performance might hinder taking the experience of participation into consideration.