Table 1.

Inclusion and exclusion criteria

Inclusion criteria (Patients)	Exclusion criteria (Patients)
Individuals over the age of 16 Living in Scotland. Under the care of a specialist HVS. Diagnosed with either MND or B/DMD. Using a ventilator at home with a minimum of overnight use	Individuals who were in crisis. Individuals who lacked capacity

Inclusion criteria (Family members)	Exclusion criteria (Family members)
Family of a patient interviewed for this study. Individuals over the age of 16	Family not undertaking substantial care responsibilities (e.g., not living with the patient). Patient did not want family member to be interviewed. Individuals who were in crisis. Invidiuals who lacked capacity