Table 1

Coding scheme for a category under the theme ‘stressors’

Uncertainties due to information gap
Participants did not know or understand aspects related to sepsis or its hospitalisation, which led to uncertainties.
Unfamiliar diseaseWhat has happened to babyxxx
Reason for infection unknownxxx
Why my babyxx
Why sudden admissionxxx
Chances of survival unknownxxx
Discharge date unknownxxx
Why breast milk not givenx
If treatment is workingx
False assurancexxx
Scary terminologiesxx
Will baby be disabledxxx
Why so many doctors around the babyxx
Sudden deterioration in baby’s conditionSudden vomitingxxx
Vomiting milk since morningxx
Weight lossxxx
Stopped drinking milk todayxxx
Sudden stomach swellingxxx
Stomach swelling worse todayx
Suddenly requires breathing supportxxx
Requires ventilator todayxx
Not active todayxxx
Suddenly drowsyxx
Suddenly seems limpxx
Sudden shaking of handsxx
Cost-relatedCost estimate unknownxx
No transparency in cost increasexx
Reason for stalled financial scheme unknownxx
‘Who to ask for money?’xx
Unsure on financial scheme—availabilityxxx
Unsure on financial scheme—usexxx
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 supportBaby not namedxx
Insurance applies to either mother or babyxxx
Inadequate informationxx
Contrasting informationxx
Stalled schemesxx
Lack of adequate resourcesLimited or no savingsxx
No incomex
Barriers to bonding
Pertains to barriers that hindered participant–baby bonding
Inaccessible visiting hoursxx
Postpartum movement restrictionsxxx
Mother unwellxxx
Mother in a different hospitalxx
Unfamiliar NICU environment
Pertains to first-time experience with sights and sounds in NICU and the hospitalised baby
Tubes and pricks—babyxx
Oxygen maskxx
Beeping soundsxx
Inadequate breast milkxx
Sick babyxxx
Baby in ventilator/machinexxx
Pumping breast milkxxx
Baby’s distressxxx
Spouse/parent health
Pertains to participants’ stress regarding their spouse’s health (father/mother) or parent’s health (grandparent)
Disturbed sleepxxx
Insufficient sleepxxx
Chest painx
Back painxx
Leg painx
Not eatingx
Not talkingx
Mute spectator in distress
Pertains to participants’ inability to
Reduce baby’s painxx
Empathise with painxxx
  • F, father; GP, grandparent; M, mother; NICU, neonatal intensive care unit.