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.

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

“…Eight of these studies used six common questions based on the ICF components [48,51,56,77,78,90,92,93] (see Appendix A for questions). All studies with the exception of one [91] used the ICF to analyse the participants' responses by linking them to the broad components or more specific categories of the ICF. Although our findings may lead to assumptions that the ICF is more widely used for systematically recording and understanding people's experiences than as a platform from which to elicit the person's narrative, future research is required to confirm this.…”

“…Just under half the studies used the ICF during data collection by asking the participants open-ended questions reflecting the ICF components [48,50,51,53,55,56,60,63,[76][77][78][88][89][90][91][92] or asking for facilitators and barriers related to each component [67] (Table 4). Eight of these studies used six common questions based on the ICF components [48,51,56,77,78,90,92,93] (see Appendix A for questions).…”

Factors Associated With Hand and Upper Arm Functional Disability in People With Rheumatoid Arthritis: A Systematic Review

“…The findings of a qualitative study recruiting RA patients with hand deformity proposed that environmental factors play a significant role in hand‐related activity limitations and participation restriction . However, in this review the impact of only a few environmental factors have been explored in relation to hand function.…”

Quality of life, participation and occupational rights: A capabilities perspective

“…Such problems have prompted researchers to explore participation as this is perceived and subjectively experienced by people in their every‐day lives. Their reports suggest that participation incorporates these overlapping concepts: autonomy (sense of choice and control), notably through enacting occupational choices; a sense of competence and accomplishment through doing; a sense of belonging, acceptance, safety and respect; the ability and opportunity to ‘do’: to engage in personally meaningful/valuable activities; the ability and opportunity to contribute to the wellbeing of others; the ability and opportunity to support and do things for others; engagement in meaningful and reciprocal relationships; having social connections (doing things with others); and social engagement and inclusion (including contributing to one's community) (Borell, Asaba, Rosenberg, Schult & Townsend, ; Dijkers, ; Hammel et al ., ; Heinemann et al ., ; Hӓggström & Lund, ; Iwarsson, ; Nicklasson & Jonsson, ; Ripat & Woodgate, ; Van de Velde et al ., ). Clearly, these are all dimensions that are important to occupation and to occupational therapists (Hammell & Iwama, ). …”