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 pretracheostomy. 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.

“New Trach Mom Here…”: A qualitative study of internet‐based resources by caregivers of children with tracheostomy

“…The most prominent characteristic of caring for a child with tracheostomy was a perceived lack of normalcy, and a significant amount of effort expended to reestablish normalcy. This is confirmed by the available literature on this topic including: difficulty with activities of daily living, 14 the challenges of caring for a child with tracheostomy, 15 frustration with in-home nursing care, lack of adequate predischarge training, and a lack of opportunity to meet with families with similar expieriences. 21 McCormick et al 21 found that fewer than half of families discharged with a tracheostomy had the opportunity to meet with another family and fewer than 10% of families were fully satisfied with the quality of their in-home nursing care.…”

“…Venn diagrams representing codes associated with (A) The "Acceptance pathway" and (B) The "Resignation pathway" of adjustment to caring for a child with tracheostomy consistent with the findings of other similar work on this topic. 5,10,[14][15][16][17][18][19][20] In addition, There appears to be evidence of specific motivations associated with these themes. Further analysis revealed two divergent pathways with substantial implications for the experience of children with tracheostomy, their caregivers, and families.…”

“…Both Wrapson et al 14 and Schaepe and Ewers 17 have found that patients living with tracheostomy and their caregivers see themselves as integral, expert members of the care team. Importantly, when the perspectives of caregivers were not welcomed by the homecare team it led to increased insecurity and mistrust.…”

A Study on Quality of Life in Post-tracheostomised Patients

“…J. Wrapson et al in their study suggested formation of a support group to provide a safe meeting environment enabling participants to feel at ease amongst people with similar condition. Alternatively an online nationwide network can be set up offering a forum for support, advocacy, information and resources either through a tertiary care provider or a group of like-minded people [ 22 ].…”