Table 3 Protective and risk factors

Innate Ring

Presence of spiritual support, guidance and counsel [81,82,83,84,85]

Perceptions of guilt, anger, desperation and Divine punishment [89, 99, 100]

Strong spiritual beliefs [151]

Belief in reunion with child in the afterlife [86, 93]

Individual Ring

Viewing death as positive outcome

Relief from suffering [92, 105]

Greater purpose [107]

Reduced fear of death [106]

Appreciation of own mortality [108, 109]

Anger, fear and guilt to changes in the child’s condition [96, 106, 117, 118, 134, 163, 171]

Well symptomatically cared for [114,115,116,117,118,119,120]

Protracted dying process [111, 120]

Poor symptom management [10, 108, 143, 146, 151, 152]

Frequent personalised and timely updates on child’s prognosis and condition [131, 132]

Being unaware of prognosis [112]

Ineffectual preparation by healthcare professionals [92, 100, 113, 116, 131, 150, 163]

Unrealistic prognostication [10, 113, 129, 132, 135, 138, 165, 166],

Personalised communication [113]

poor communication [10, 82, 116, 117, 129, 131, 132, 135, 143, 148, 165,166,167]

Being present at the death [98, 126, 140, 143,144,145]

Not involved in end-of-life decision [84]

Separated from the child [131, 148]

Lack of a conducive environment to say goodbye [148, 164]

Respect for advanced care plan [111]

Effective end of life care [121,122,123,124]

Inadequate social [82, 88, 120, 148, 154, 161, 165, 175]

Inadequate spiritual [82, 88, 98, 176, 177]

Inadequate bereavement support [82, 83, 89, 92, 108, 109, 127, 141, 143, 148, 150, 152, 154, 163, 178]

Positive means of coping including:

Remembering the child [87, 89, 90, 106, 109, 132] (memory boxes, commemorating anniversaries) [82, 89, 92, 95, 96, 115, 116, 127, 138, 156,157,158]

Greater self-care [152, 155]

Giving back to society [106, 109, 134, 149, 152]

Donating organs [87, 90, 92, 109, 127, 138, 155]

Re-dedicating their lives [107, 109, 134]

Anxiety, depression, post-traumatic stress symptoms [89, 158, 163, 168, 172, 173]

Insomnia [89]

Permanently damaged parental self-concept [168]

Role confusion [171]

Poor social function [10, 89, 99]

Functional impairment such as phobias, or somatic problems [81, 92, 155, 163, 174]

Suicidal ideation and prolonged grief [10, 89]

Relational Ring

Spousal support [89, 90]

Spousal disagreements, stress, grief [39, 92, 112, 134]

Support from family and friends [88, 137, 140, 154, 155, 176]

No family/friends to support [83]

Insensitivity from family/friends [85, 90, 167]

Support from remaining children [92, 109]

Previous neglect of other children [82, 83, 95, 143, 148, 150, 155]

Societal Ring

Continued support from healthcare professionals who knew family and the child [81, 83, 88, 108, 114, 135, 138, 140, 146, 147]

Feeling ‘abandoned’ by the hospital staff [82, 85, 114, 120, 127, 176, 183]

Reporting feeling of having suffered a ‘double loss’[109] or ‘multiple losses’ [111] following poor bereavement support [184]

Trusting relationship with healthcare professionals [114,115,116,117,118,119, 147]

Able to share feelings [127, 128]

Receive guidance [116, 117, 119, 127, 129, 130]

Receive culturally appropriate care [87, 117, 128, 135, 136]

Receive compassionate care [90, 111, 115, 118, 119, 134]

Lack of professional support [84, 125]

Poor transition of care [114, 127, 129, 140, 143, 148]

Role conflict [167,168,169]

Loss of parental role [113, 160]

Lack of cultural sensitivity [170]