The meaning of the name of ‘pulmonary rehabilitation’ and its influence on engagement with individuals with chronic lung disease

Abstract

Pulmonary rehabilitation (PR) is recommended for all individuals living with a lung condition and chronic breathlessness. This article considers how adopting an interdisciplinary, medical humanities approach to the term ‘pulmonary rehabilitation’ might unpack some of the misconceptions, misrepresentations or negative connotations surrounding it, which have been largely overlooked in explanations of the low uptake of this programme. Taking key insights from Wellcome Trust-funded Life of Breath project, including ethnographic research in community fitness groups in North East England and the ‘Breath Lab’ special interest group, this article outlines how the whole-body approach of PR is not easily understood by those with lung conditions; how experience can inform breath perception through the pacing of everyday life; and how stigma can impact rehabilitation. This article highlights the value of medical humanities in working through communicative challenges evident in the translation of PR between patient and clinical contexts and sets out two arts-based approaches (Singing for Lung Health and dance movement) as potential options that could be included in the PR referral. Finally, the article outlines the need for collaborative research exploring the communication and meaning of healthcare strategies and experiences at the interface of the arts, humanities and medical practice.