Table 1.

Sample description of primary caregivers interviewed

Total	19
Mothers	18
Fathers	1
Single	2
Married or living with a partner	17
Age range	27‐53 yearsa
Age range of children at the time of being recipient to the nursing/health‐care procedures	3 months to 11 yearsb
Procedures parents carried out
Inserting nasogastric tube	9
Changing and routine care of tracheostomy tubes	5
Insertion or changing of gastrostomy feeding tube or button	5
Finger/thumb pricks	4
Other nasal procedures such as inserting nasal prongs and cannulas, nasal suctioning	4
Injections	2
Changing of dressings	2
Oral suctioning	2
Jejunostomy	1
Bladder manipulation	1
Colostomy care	1
Suppositories	1

Conditions of children represented in the sample (some generalized if very rare): brain damage; cancer/leukaemia; cerebral palsy; congenital condition affecting the urethra and rectum; congenital heart conditions; low immunity; lung disease; neurodegenerative conditions; rare chromosome conditions; undiagnosed.

^aData not available for two participants; one participant described her age as “early sixties.”

^bOne child had just turned 11 years of age at the time of recruitment and was thus included in the study.