Next of kin’s protracted challenges with access to relevant information and involvement opportunities

Figures & data

Table 1 The sample described by gender, age, and relationship

Gender	Age (years)	Next of kin to
1. Female	70	Husband
2. Female	29	Mother and sister
3. Female	67	Husband
4. Female	67	Husband
5. Male	73	Wife
6. Female	55	Husband
7. Female	41	Husband
8. Female	81	Husband
9. Female	53	Husband
10. Female	65	Husband
11. Female	76	Husband
12. Female	40	Mother
13. Female	42	Mother
14. Male (interview 13)	73	Wife
15. Female (interview 14)	77	Husband
16. Female (interview 15)	42	Husband
17. Female (interview 16)	68	Husband
Total of 15 females and 2 males	29–81 years Average: 59.9 years	Partner: 14 Mother/sister: 3

Table 2 An illustration of a part of the analytic process – from data to main theme

Meaning units	Condensed meaning	Sub-themes	Main theme
… he has an active life, but I am worried all along because I think he doesn’t behave as he should do. For me, it’s demanding to know he might have a new stroke. … this night it was flutter again—you wake up and suddenly the person who use to lie beside you is not there. This has been ongoing for months. I get out of bed, I search for him in the house—afraid I will find him dead. He just does this to be considerate to me … sit in a chair waiting for the flutter to pass. (Int. 9)	The wife is continuously worried about a new stroke. The wife often wakes up at night over a long time. When her husband is out of bed, she is afraid to find him dead.	Constant worrying On the alert, alone and afraid of fatal new events for a long time	Being alone in their worry