Experiences of next of kin to patients with amyotrophic lateral sclerosis using invasive ventilation via tracheostomy

Figures & data

Table 1. Characteristics of next of kin (n = 8) and patients with ALS (n = 6).

Next of kin
Age, years, median, (IQR), min-max	49 (35–58), 27–64
Sex, women/men, n	6/2
Relation
Wife, n	3
Mother, n	1
Father, n	1
Daughter	2
Son	1
Cohabiting with patient, n	4
Work status
Employed as personal assistant full time/part time, n	3/4
Patient with ALS
Age, years, median, (IQR), min-max	55 (31–62), 26–68
Sex, women/men, n	1/5
Time since diagnosis, years, median (IQR), min-max	5.0 (4–11) 3–12
Invasive ventilation since, years, median (IQR), (min-max)	3.5 (1–6) 1–7

Table 2. Information on participants providing quotes.

Next of kin 1 > mean age and cohabiting; patient > median time since diagnosis and TIV)

Next of kin 2 < mean age and cohabiting; patient > median time since diagnosis and TIV)

Next of kin 3 > mean age and cohabiting; patient < median time since diagnosis and TIV)

Next of kin 4 < mean age and not cohabiting; patient < median time since diagnosis and TIV)

Next of kin 5 < mean age and not cohabiting; patient < median time since diagnosis and TIV)

Next of kin 6 > mean age and cohabiting; patient > median time since diagnosis and TIV)

Next of kin 7 > mean age and not cohabiting; patient < median time since diagnosis and TIV)

Next of kin 8 < mean age and not cohabiting; patient < median time since diagnosis and TIV)

Table 3. The steps of the content analysis process.

Step 1.	The transcribed interviews were read through several times to get a sense of their content.
Step 2.	The text was divided into meaning units comprising words, sentences or paragraphs related to each other by their content and context.
Step 3.	The meaning units were condensed, i.e., the text was shortened without interpretation and still contained the core of the meaning units.
Step 4.	Through a process of interpreting the underlying meaning, each condensed meaning unit was labelled with a code.
Step 5.	Codes were compared and those with similar content were grouped into subthemes. The initial number of subthemes was reduced after a process of re-reading codes and re-considering the interpretation of the underlying meaning and the whole context, thus moving between the whole and parts of the text.
Step 6.	The subthemes were analysed by their latent content in a process of investigating how next of kin experienced invasive ventilation via tracheostomy in their relative with ALS. Three main themes were constructed based on the underlying meaning of the subthemes.