A life-changing event: patients’ personal experiences of living with a long-term tracheostomy

ABSTRACT

A tracheostomy is a commonly performed surgical procedure to alleviate some form of inadequate breathing. Tracheostomies may be temporary in the case of airway emergencies or may be for long-term access to airway and breathing depending on a patient's condition; in the case of the latter, this may have a major impact on a patient's life, one for which they are frequently unprepared. There is growing recognition that patients’ views of their health care experience are an important component of quality of care. Through a deeper understanding of the challenges inherent in being a tracheostomy user, we sought via a two-stage study to inform the design of products for use by individuals with permanent tracheostomies. Stage one involved 10 participants taking part in in-depth interviews to understand the lived experience of long-term tracheostomy patients. Using thematic analysis, we found participants accepted the need for a tracheostomy but were keen to return to a life pre-tracheostomy. The restrictions the current designs of tracheostomy imposed was evidenced by the time required to spend on the daily care of their stoma and tracheostomy equipment, and by the significant restrictions on activities of daily living. Findings from stage one informed subsequent co-design workshops.

KEYWORDS:

• Tracheostomy
• long-term
• adult
• qualitative
• community
• quality of life

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Auckland University of Technology, New Zealand (NZ), 2016 Strategic Research Investment Fund grant.

Notes on contributors

Jill Wrapson

Jill Wrapson is a researcher with a background in the social history of medicine, and a particular interest in contemporary health. Recent research has revolved around user experiences in a children's hospital outpatients’ environment, as well as investigating the challenges people face living with long-term tracheostomies. Jill is currently involved in a person-centred project exploring the most effective ways to increase the impact of academic health research.

Niamh Patterson

Niamh Patterson is a recent BSc (Hons) psychology graduate who has worked as a research assistant with the Psychophysiology Lab at Auckland University of Technology, as well as with the AUT's Design for Health and Wellbeing Lab. Her research with the DHW Lab has focused primarily on patient psychosocial wellbeing.

Ivana Nakarada-Kordic

Ivana Nakarada-Kordic is a qualitative researcher with a background in human factors and health psychology. Her work at the DHW Lab focuses on user experiences in the health care context. As part of the Lab's multidisciplinary team, she is currently involved in various co-design projects involving patients, designers, researchers and clinicians in the Auckland area.

Stephen Reay

Stephen Reay is co-director of the Design for Health and Wellbeing Lab, a collaboration between the Auckland District Health Board and AUT, initiated to develop an intentional relationship between design process and the area of health and wellbeing, and underpinned by interdisciplinary collaboration and a strong focus on user-centred design.