Initiation of NIV

Preparing the patient and carer

Patients and carers need to be prepared both physically and psychologically to start NIV. This is extremely important to ensure patients can adhere to NIV and are able to adjust to this new phase in their disease.

This section will describe how to approach the time of initiation and prepare the patient and carer. You might wish to review this before an initiation appointment.

Patient and carer perceptions of NIV: What to explain and how to overcome them

Research (Baxter et al., 2013) and clinical experience has shown that there are a number of potential barriers that patients and carers face when starting NIV. These include adverse impressions of the technology, sleep disturbance, the sensation of pressure and pulsing, dry mouth and mask design issues.

A key factor described by patients and carers was the need to persevere to overcome the challenges associated with early NIV use.

It is helpful to discuss these barriers and help patients recognise the benefits they may begin to experience as they use NIV. These include increased energy, improved sleeping, enhanced carer wellbeing, improved breathing and increased speech clarity.

Healthcare professionals should explain the procedure of setting up NIV in a positive and calm manner both prior to setting up NIV and on the day, as well as provide reassurance throughout setting up NIV. Services should provide patients and family members with information, training and clear information so they know that they are allowed to ask for help, when to ask for help and who to ask. This might including signposting to the MyBreathing website when first mentioning NIV and revisiting this website at regular internals.

Key factors that influence patients and carers when starting NIV. From Baxter et al., 2013.

Preparing to start NIV: The patient’s perspective

“It’s been worth doing, it’s having the detail, the real nitty gritty detail written down for yourself which for anybody I would say, do it - really”

Julie, person living with MND

In the following video, Julie talks about the importance of providing patients, family members and external carers with written information and labelling to help support them using and maintaining NIV.

In the following video, Rosie Whitehead, a Respiratory Physiotherapist, describes the importance of providing training for family members and professionals carers so they are confident in supporting the patient to use NIV.

Patients may experience psychological difficulties such as distress when being initiated on NIV. In the following clips, Dr Emily Mayberry, a Clinical Psychologist, describes the psychological difficulties that patients may experience and how to manage distress.

Good practice points

- Healthcare professionals should explain the procedure of setting up NIV in a positive and calm manner, and provide reassurance.
- Healthcare professionals should give patients and their family members appropriate training and information to support them to use and deliver NIV.
- Patients and carers should be provided with written details of in-hours and out-of-hours support and emergency action plans.
- Patients should be encouraged to use NIV to treat symptoms of respiratory failure.
- Caution should be taken when given oxygen therapy to people living with MND.
- Healthcare professionals should prepare patients for infection and emergencies.

Topics to cover before NIV is started

Recap the benefits of NIV.
The potential symptom improvement they might expect.
The option to decline or stop NIV at any time and the additional symptomatic support available.
That NIV will eventually stop working and that options to manage this are available.
The place of initiation.
The practical impact on the patient, carer and family including a discussion about the need for support from carers.

Topics to cover at the time of initiation

The programme of acclimatisation and the need for slow or rapid optimisation depending on the urgency.
The need for perseverance, particularly in the first few weeks until optimisation is achieved. What benefits the patient may be noticing.
The need to report problems to the NIV team and that many problems can be overcome.
How to gain support during working hours and out of hours.
The members of the MDT who can support NIV use.