Tracheostomy Support at Home: What Families and Support Workers Need to Know

A family member with a tracheostomy can totally change your daily life. New technologies will have to be learned, new routines established and a higher understanding will be required in case there is some kind of emergency.

Nevertheless, a tracheostomy does not mean living in a closed world. If there is enough preparation, many people continue going to work, college or school, travel, spend time with friends and continue doing their daily activities.

Good Tracheostomy Support at Home is about balancing the necessity to take into account the medical aspect of the situation and the need to keep the person getting help as the focus of the care.

In this guide, you will find out the things that families and support workers should consider in order to organise the care process. This is general information which does not replace any clinical guidelines, individual care plan or practical training.

Understanding a Tracheostomy

A tracheostomy is a surgical opening through the front of the neck into the windpipe, or trachea. A tracheostomy tube sits inside the opening and allows air to reach the lungs without travelling through the nose and mouth.

There are numerous reasons why a person would require this procedure. Some causes could include prolonged ventilation, an obstruction of the upper airway, neurological or neuromuscular issues, spinal cord injury, inability to clear secretions and certain head and neck cancers.

There are temporary and permanent tracheostomies.

The primary factor at home is that the normal function of the upper airway has been bypassed. The normal process involves the nose warming, filtering and humidifying air. Because of this, humidification, secretion management and airway clearance become important parts of daily respiratory care.

It should also be noted that there is a significant consideration of whether a person can breathe on their own or they require ventilator support or home ventilation.

Why Tracheostomy Support Needs Specialist Training

Tracheostomy support is part of the NDIS provisions related to High Intensity Personal Activities performed daily. The corresponding skill guide emphasises participant-based learning, competence, and training as opposed to previous health-care experience.

That distinction matters. A worker might have years of experience in Intensive Care, for example, but still need orientation and competency assessment for a particular participant's equipment, routine and emergency procedures.

A person may use a standard tube, a cuffed tracheostomy tube or a fenestrated tracheostomy, and the equipment and procedures can differ between individuals.

The same applies to suctioning. A worker may understand the theory of using a suction machine, but still need practical instruction on the participant's particular suction catheter, suction settings and prescribed technique.

This is why hands-on training matters. Families should ask who provides it, who assesses competency and how that competency is recorded and reviewed.

General knowledge is useful, but it is not a substitute for knowing the person.

What Daily Tracheostomy Care can Involve

There is no universal routine. The participant's personalised support plans should explain what support is required, what equipment is used and what workers should do when something changes.

Depending on the person's needs, tracheostomy care may include several different tasks.

Suctioning and airway clearance

Some people cannot clear secretions effectively by coughing and may require tracheal suctioning.

The support plan should specify when suction is required, the appropriate equipment and the technique the trained worker should follow.

The suction catheter must be appropriate for the person's equipment and procedure. The suction machine should be functioning, charged where applicable and ready for use.

Some households may have more than one suction machine available, particularly where the person regularly travels between locations or needs backup equipment.

Humidification

Because the tracheostomy bypasses the nose, artificial humidification may be required.

A Heat Moisture Exchanger may be used for some people, while others may require a heated humidification system or another method recommended by their treating team.

If secretions become thick, airway clearance can become more difficult. This is why humidification may be a small part of the daily routine but a significant part of preventing complications.

Stoma and tube care

The skin around the opening is known as the stoma site.

Tracheostomy site care may involve cleaning, observing the skin and changing dressings or ties according to the person's plan.

A worker may also need to support care of the Inner Cannula, where the person's tube has one, and replace a tracheostomy tie or dressing as instructed.

Changes such as redness, swelling, discharge, bleeding, skin breakdown or increasing discomfort should be reported according to the person's escalation plan.

Ongoing pressure from equipment can contribute to a pressure injury, while poorly managed skin irritation can eventually cause more significant damage.

What Should be Ready Before the Person Comes Home?

Organising home support is better prior to discharge and not on the night before it.

There might be families who are collaborating with discharge teams, transition coordinators, respiratory care specialists, and the provider to ensure that they understand the plan.

The exact equipment list should come from the treating team, but may include a tracheostomy kit, spare tubes, suction equipment, dressings, humidification supplies and other emergency items.

Depending on the person's plan, supplies may include non-sterile gloves, cotton wool applicator sticks, a tracheostomy bib, fenestrated gauze or a fenestrated dressing.

Not everyone needs every item. A family should not build an emergency kit based on an internet checklist when the treating team has provided a participant-specific list.

Backup power may also be necessary for suction equipment, humidification systems or ventilation equipment.

The family should know what happens during a power outage and who should be contacted if essential equipment fails.

Emergency planning should be simple enough to use

An emergency plan is only useful if the people providing care understand it.

The participant's plan should explain what to do if the tube becomes blocked or displaced, if breathing changes, if there is significant bleeding or if essential equipment fails. This is the practical side of emergency preparedness.

It is also necessary to specify the anticipated emergency response. The staff must know when they should resort to the immediate response procedure, or contact the clinical staff or emergency service.

Emergency tracheostomy management must never be left to workers who will improvise a procedure which they were not trained for.

Families should also consider where emergency equipment is kept. If a person requires particular equipment whenever they leave the house, it should travel with them according to their clinical plan.

What Should Workers Watch for?

Support workers are usually the first ones to notice changes in the care receiver as they see them during routine hours.

Possible warning signs can include:

• Increased effort or difficulty breathing
• A noticeable change in breathing pattern
• Thicker, increased or unusual secretions
• Difficulty with the usual suctioning process
• Bleeding or changes around the stoma
• Swelling, redness or skin breakdown
• Fever or signs of infection
• Unusual tiredness or reduced responsiveness
• A change from the person's normal behaviour or communication.

The respiratory system can react quickly to changes in airways but workers are not expected to establish what the cause was.

They just have to notice that some change happened, stick to the person’s guidelines and act accordingly.

This is also why continuity matters. A worker who knows the participant may notice that they are unusually quiet, fatigued or unsettled before somebody unfamiliar recognises that anything has changed.

Humidification, Secretions and Coughing

Secretions are one of the practical issues families often become very familiar with.

The upper airway normally warms and humidifies air before it reaches the lungs. A tracheostomy changes that, so the person's plan may include humidification to help keep secretions manageable.

The air that reaches the lungs should be warmed and humidified through the upper airways. The tracheostomy procedure alters this, and therefore, the humidification is included in the care receiver's plan.

Some people may also use cough assist or other clinically prescribed techniques. The right approach depends on the person's condition, respiratory function and ability to cough.

A person with particular respiratory conditions may have very different needs from another person with a tracheostomy. This is why workers should follow the established plan rather than copy a technique used for another participant.

Speaking and Communication

A tracheostomy does not automatically mean that someone cannot speak.

Depending on the person's tube and clinical circumstances, they may use a speaking valve or another approach to communication.

A speech pathologist or speech therapist may be involved in assessing communication and swallowing. Speech and language therapy can also form part of the person's wider support where clinically appropriate.

The communication must be practical rather than written. In case the individual has limited speech, it must be ensured that everybody who works with the participant knows how the participant conveys their pain, discomfort, fear, refusal, etc.

Eating, Swallowing and Nutrition

Tracheostomy does not necessarily prevent an individual from eating.

There are some who eat and drink without difficulty, while others may have difficulties with swallowing. A feeding tube may be used in cases where the individual cannot safely swallow.

In cases of swallowing difficulties, a medical team consisting of a speech pathologist and dietitian, among others, may be required.

Workers should follow the person's individual swallowing and nutrition instructions rather than making their own decisions about food or fluid safety.

Aspiration is another consideration for some people. Aspiration pneumonia can occur when material enters the lungs, but workers should not attempt to diagnose aspiration themselves. Any concerns should be managed through the participant's clinical plan.

Tracheostomy and Ventilation

Some people with tracheostomies also need ventilator support. This can include people who require continuous ventilation, people who use ventilation overnight and people going through ventilation weaning.

The additional equipment means the worker's responsibilities can be more extensive, and training needs to reflect the participant's actual setup.

This is particularly relevant for ventilated adults receiving support at home. A worker who understands tracheostomy support should not automatically be assumed to be competent in ventilator management.

The same principle applies to oxygen. Oxygen therapy should be provided and managed according to the person's clinical instructions, including the equipment and escalation arrangements.

Different Tubes Require Different Knowledge

There are many types of tracheostomy tubes.

A cuffed tracheostomy tube, for example, has an inflatable cuff. Where cuff management forms part of the person's support, workers need to understand the participant-specific instructions, including any requirements relating to cuff pressure.

A fenestrated tracheostomy has an opening that can allow airflow towards the upper airway under appropriate circumstances.

These differences are another reason why “I've worked with tracheostomies before” is not enough information when assessing whether a worker is suitable.

The relevant question is whether they have been trained and assessed for this person's needs.

Choosing a Provider

When comparing home care services, families should ask practical questions instead of relying on broad claims such as “our staff are experienced”.

Ask:

• Who would deliver the specific training to the participant?
• How is competency measured?
• What if the regular employee gets ill?
• How many adequately trained employees are available?
• Who delivers medical assistance beyond normal working hours?
• How are incidents recorded?
• How is the care plan reviewed?
• What if the needs of the participant change?
• What if the equipment fails?
• Is the organisation a registered NDIS provider where such registration is mandatory for the provision of support?

Build a Small but Reliable Team

Having one highly skilled worker feels like a dream come true. The issue arises when this individual goes on holiday, falls ill, or leaves his job.

Tracheostomy care cannot be left to someone who has no idea what they are doing.

Wherever possible, the family must make efforts so that there are two or more workers who are properly trained and acquainted with the care receiver.

A small team also means that the care receiver enjoys continuity without the process being entirely contingent on one person.

This is about dignity as well as the safety of the person. In some cases, respiratory care includes performing intimate actions, and so it is necessary for people to have comfortable and respectful communication.

Other Complex Health Needs May Overlap

Tracheostomy support can sit alongside other complex care. A participant might also require medication routines, wound support, nutrition assistance or other clinical interventions.

For example, someone may have a central line or require Home TPN. Another person may be recovering from pressure sore surgery and need wound-related support.

These needs should not be treated as automatically covered simply because a worker has tracheostomy experience. Each area requires the appropriate assessment, training and clinical direction.

The same applies to medication. A worker should understand what they are authorised and trained to do, what needs to be documented and who to contact if something does not match the person's usual routine.

Looking After the Skin Around the Tracheostomy

Routine assessment should take into consideration skin and stoma care. Being exposed to constant moisture, friction, and pressure due to equipment use could cause harm to the skin. Changes may also occur in light of changes in body size and level of physical activity.

The person's plan may specify particular dressings and cleaning methods.

Over time, the body can also develop scar formation around the tracheostomy site. Not every scar is a problem, but a new or changing area should be discussed with the appropriate clinician if there are concerns.

Workers should report changes rather than deciding that a skin problem is “normal”.

Documentation and Digital Records

Good documentation helps everyone work from the same information. Relevant records can include competency assessments, care plan updates, incident reports, equipment checks and communication from clinicians.

Where providers use digital systems, they should have an appropriate security solution for protecting sensitive participant information.

Data quality matters too. Incorrect entries or malformed data can create confusion, particularly when an important clinical instruction is being communicated between several people.

Technology should make communication easier, not replace careful clinical communication.

The Role of the Broader Clinical Team

A strong arrangement usually involves more than support workers. Depending on the person's circumstances, the team may include respiratory clinicians, nurses, allied health professionals and the participant's existing medical providers.

Critical care nurses may be involved during the hospital stage, while respiratory nurse consultants or community-based clinicians may provide relevant input after discharge.

The treatment team may also consist of professionals who are aware of the respiratory or neurological problems of the patient.

It is not meant to be a large team per se but rather one where all individuals know what part they are supposed to play.

Going Out Should Remain Possible

A tracheostomy does not mean someone has to stay home. Going out may require planning around portable suction, batteries, emergency equipment, medication and trained support.

Some people need more preparation than others, but the aim should be to make community participation achievable rather than automatically treating the home as the only safe place.

Depending on the person's NDIS funding and circumstances, broader care packages may involve different supports that help with daily activities, community participation and clinical needs.

The clinical requirements should be respected without allowing them to unnecessarily shrink the person's life.

The Transition From Hospital to Home

Discharge from hospital to home can be overwhelming. In the hospital setting, there will be access to specialised equipment and staff around the clock. However, at home, the family will have to learn how to conduct the same process in a totally new environment.

Good communication between discharge teams, the family, providers, and clinicians can help ease this process.

In some instances, transition coordinators will be needed. There may also be respiratory nurse consultants or other clinicians available to assist with respiratory needs.

The first few weeks are also when families discover which parts of the original plan work well and which need adjusting.

A plan written before discharge should therefore be reviewed as the household gains practical experience.

What if the Person Needs Ongoing Specialist Support?

Not all people who have a tracheostomy need the same amount of clinical involvement.

Someone recovering from an acute condition will need less assistance over time. One who has a progressive condition will require more assistance.

This is also true for those who have a tracheostomy in conjunction with cancer, neurological issues, or prolonged ventilation.

The system must have enough flexibility to accommodate this. It would be unfortunate for a participant to experience a crisis before it becomes clear whether or not their staff, equipment, and strategy remain appropriate.

Common misconceptions

• A tracheostomy means the person is critically ill.

Not necessarily. A person can be medically stable and live with a tracheostomy for years.

• Anyone with healthcare experience can provide the support.

Experience is important but appropriate participant-specific training and competency assessment still remains a priority.

• Everyone with a tracheostomy needs suctioning at fixed times.

Not necessarily. Suctioning requirements differ between people and should follow the individual's plan.

• A person with a tracheostomy cannot speak.

Not automatically. Some people can speak, while others use alternative communication.

• A person with a tracheostomy cannot eat.

Not necessarily. Swallowing ability varies from person to person.

• A tracheostomy means they cannot leave home.

Many people leave home regularly. The arrangements simply need to account for their individual equipment and support requirements.

When Should the Support Plan be Reviewed?

Families should not wait for an annual review if the person's needs have changed significantly.

A review may be appropriate after:

• a hospital admission
• a change in tube type
• changes in ventilation
• repeated airway problems
• significant changes in secretions
• new swallowing or communication concerns
• new equipment
• changes in the person's health
• changes to the support team.

The person's Tracheostomy Management should reflect their current circumstances, not simply reproduce an old hospital document.

A worker who has not performed the support for a long period may also need their competency reviewed before returning to the role.

What Families Should Ask Before Support Begins

Before choosing a provider, it can help to write the questions down.

Ask:

• Who will train the workers?
• How will you assess their competency?
• What happens if my regular worker is unavailable?
• Who do we contact after hours?
• What equipment will workers be expected to use?
• Where is the emergency plan kept?
• How will changes from the medical team reach the workers?
• How will you protect my privacy and records?

These questions can tell you much more about a provider's approach than a general statement that they specialise in complex care.

The Goal is a Full Life, Not Just a Safe Airway

The clinical side of tracheostomy support requires real respect because a blockage, an equipment malfunction or sudden changes in respiration which can become serious very quickly. This is why preparation, training and proper escalation procedure should always be in place.

However, safety is there to support a life, not replace it.

An effective combination of appropriate airways management, skilled personnel, proper equipment, emergency plan and clinical supervision must also include respect for a person whose life is being supported.

This is what ensures Tracheostomy Support at Home is sustainable.

It is not merely about keeping a tube clear. It is about establishing a support arrangement that keeps the person healthy while providing enough space for normal activities.

Support Network helps people from all around Australia get in touch with support workers and care providers who can help them organise tracheostomy support. For this purpose, the first step would be establishing a team that knows the participant's particular requirements and knows exactly how the training, clinical supervision, emergency plan and support are going to happen.