Background

Patients with serious illnesses often receive a breathing tube in order to survive. If the breathing tube is needed for a long period of time, a breathing tube known as a tracheostomy may be inserted through a surgically made hole in the neck. Patients receiving this are often very ill, requiring care from many different specialists throughout their illness. While in hospital, those unable to access this care have longer hospitalizations, prolonged need for the tracheostomy, and are at greater risk of other health complications. Because breathing and swallowing use the same structures in our body, and even share the same pathways, patients receiving a tracheostomy also have trouble swallowing. If a patient is unable to swallow properly this can: delay recovery, make their breathing worse, lead to malnutrition and/or even death.

In Canada, many hospitals do not have a process to ensure a swallowing specialist sees all patients with tracheostomy who are at risk for swallowing difficulties. To help ensure that patients receive the care they need, our aim is to engage and consult with patients, families, clinicians and policy makers to find out what is important to them for a clinical care pathway (care map) int his area of medicine. We will also gather all of the best available medical evidence that would outline the best way to care for these patients and eventually inform a care map.

Our request is to fund consultations, evidence gathering and the formation of a group of stakeholders invested in helping patients with tracheostomy.

This group will include all phases of the health continuum (from patients to clinicians to policy makers) and geographic areas of Alberta. Through this process we will find out what is important to stakeholders, review the best available information on swallowing following tracheostomy and creat a plan for future funding to design a care map and its knowledge to action plan.

Roles and Responsibilities

We are looking for patients with lived experience of tracheostomy and/or their caregivers to share their lived experience insights and perspectives. This will include a) a short and informal conversation with one of our study team members over videoconference and b) to join in two hybrid (online and in-person) meetings with our Alberta-based team of clinicians.

The purpose of the meetings is to identify key priorities for the development of a clinical care pathway (care map) for swallowing assessment/management for patients with a tracheostomy in critical care.

Time Commitment

This project will start March 2023. The total time commitment is about five hours. There is the one initial individual conversation (approximately one hour) and two subsequent meetings (approximately two hours each). We anticipate hosting the initial individual conversations throughout March 2023, with two meetings to take place later in the Spring and Summer 2023.

Compensation

Patient partners who are able to join in the intial conversation and two meetings will be offered an honorarium of $200.

This is an online opportunity so there are no expenses associated with travel and parking.