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. 2020 Nov 11;106(1):20–29. doi: 10.1136/archdischild-2020-319226

Table 1.

Coding scheme for a category under the theme ‘stressors’

Category Subcategory Code M F GP
Uncertainties due to information gap
Participants did not know or understand aspects related to sepsis or its hospitalisation, which led to uncertainties.
Unfamiliar disease What has happened to baby x x x
Reason for infection unknown x x x
Why my baby x x
Why sudden admission x x x
Chances of survival unknown x x x
Discharge date unknown x x x
Why breast milk not given x
If treatment is working x
False assurance x x x
Scary terminologies x x
Will baby be disabled x x x
Why so many doctors around the baby x x
Sudden deterioration in baby’s condition Sudden vomiting x x x
Vomiting milk since morning x x
Weight loss x x x
Stopped drinking milk today x x x
Sudden stomach swelling x x x
Stomach swelling worse today x
Suddenly requires breathing support x x x
Requires ventilator today x x
Not active today x x x
Suddenly drowsy x x
Suddenly seems limp x x
Sudden shaking of hands x x
Cost-related Cost estimate unknown x x
No transparency in cost increase x x
Reason for stalled financial scheme unknown x x
‘Who to ask for money?’ x x
Unsure on financial scheme—availability x x x
Unsure on financial scheme—use x x x
Financial constraints
‘Relates to participant’s struggles in arranging money to pay for medical and non-medical costs related to baby’s hospitalisation’
Inaccessible financial support Baby not named x x
Insurance applies to either mother or baby x x x
Inadequate information x x
Contrasting information x x
Stalled schemes x x
Lack of adequate resources Limited or no savings x x
No income x
Barriers to bonding
Pertains to barriers that hindered participant–baby bonding
Inaccessible visiting hours x x
Postpartum movement restrictions x x x
Mother unwell x x x
Mother in a different hospital x x
Unfamiliar NICU environment
Pertains to first-time experience with sights and sounds in NICU and the hospitalised baby
Tubes and pricks—baby x x
Oxygen mask x x
Beeping sounds x x
Machine/incubator x x x
Inadequate breast milk x x
Sick baby x x x
Baby in ventilator/machine x x x
Pumping breast milk x x x
Baby’s distress x x x
Spouse/parent health
Pertains to participants’ stress regarding their spouse’s health (father/mother) or parent’s health (grandparent)
Physical Insomnia x x
Disturbed sleep x x x
Insufficient sleep x x x
Gastritis x
Chest pain x
Back pain x x
Leg pain x
Weakness x
Dizziness x
Fatigue x x
Not eating x
Emotional Stressed x x x
Crying x x x
Not talking x
Mute spectator in distress
Pertains to participants’ inability to
Reduce baby’s pain x x
Empathise with pain x x x

F, father; GP, grandparent; M, mother; NICU, neonatal intensive care unit.