Table 2.

Developing categories and themes from coded data

Author	Codes	Categories	Theme
Monsen30	Initial reactions such as disbelief and confusion were replaced by worrying about the child	Grief	Parent Impact
Maltby et al.29	Fear and anxiety about the impact of the condition for the child were accompanied by the loss of the image of ‘the healthy child'
George et al.27	Grief was related to feelings of shock, anger, fear, guilt, denial and were associated with uncertainty of the impact of the condition for the family
Johnson28	Mothers lived in the present to meet the child's needs but re‐lived the past as grieving continued	Chronic sorrow
George et al.27	Chronic grief resulted in on‐going sadness which increased as the condition progressed
Bowes et al.26	Revisiting the diagnosis suggested parents' grief in relation to the child's diagnosis is on‐going