The lived experience of Dupuytren's disease of the hand

Abstract

Aims: To describe patients' experiences of living with Dupuytren's disease.

Background: Dupuytren's disease is a chronic, progressive deformity of the hand which limits active extension of the fingers due to advancing and irreversible flexion deformity. It is estimated that two million people are affected by the condition in the UK. Nurses may frequently encounter patients with this condition in a wide range of settings. However, the disease is neglected in the nursing literature and little is known about patients' experience of living with the condition.

Design: A phenomenological approach, using Coliazzi's method, was employed.

Method: Semi-structured interviews were conducted with six men and one woman diagnosed with Dupuytren's disease.

Results: Four interlinking themes emerged. Theme 1: Awareness of Dupuytren's disease describes participants' experiences of recognising and acknowledging the disease, which often did not occur until functional ability was restricted. Theme 2: Living with Dupuytren's disease describes how patients coped with the disease and adapted their activities to maintain independence. Theme 3: Deciding on treatment illuminates how patients decided on treatment and highlights a lack of information and support from health professionals. Theme 4: Receiving treatment articulates participants' experience of surgical treatment and post surgical rehabilitation.

Conclusions: The findings revealed that people living with Dupuytren's disease receive little information about their condition and possible treatment from health professionals yet high quality and accurate information is required for patients to understand their condition and the treatment options available.

Relevance to clinical practice: People with Dupuytren's disease do not always recognise their condition until it has significantly progressed. Following diagnosis they need accurate and up-to-date information about their condition and treatment options. Nurses have an important role to play in raising awareness of the disease, educating patients about its features and progression and enabling them to become active partners in decisions about treatment.