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Table 3 Positive and negative experiences

From: When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care

 

Number of quotesa

Sample quote

Positive experiences

180

 

 Support of the family unit

174

Our individual needs were always supported. (18:6) b

 Communication

54

Honesty when informing about our child’s situation. (22:2)

 Shared decision making

8

Ethics council helped to take the right decision. (35:4)

 Relief of pain and other symptoms

8

Oxygen support at home, mail order of medication. (101:2)

 Continuity and coordination of care

46

Reachability day and night (hospital and community care). (17:1)

 Bereavement support

39

That a lot of time was provided (by the hospital) to be with my son after his death. (3:1)

Negative experiences

165

 

 Support of the family unit

110

I felt left alone (75:3)

 Communication

73

Not having enough information about my child’s situation (61:3)

 Shared decision making

14

The night doctors did not support and follow our decision to end treatments. (5:7)

 Relief of pain and other symptoms

27

Pain and shortness of breath. There was a phase when effective medication lagged behind the symptoms. (33:10)

 Continuity and coordination of care

53

When the physicians and nurses always change. (116:2)

 Bereavement support

51

No follow up care for us after her death. I needed to find my own psychologist/support group. (97:7)

  1. aEach listing of a positive or negative experience (quote) was potentially coded to more than one domain. bNumbers in parenthesis represent the quote’s identification number