Table 2

Organ system outcomes

Organ system outcome domainsNumber of studies discussing outcome domain (n=62)OutcomeNumber of studies discussing outcome
Verbatim text extract
Developmental32Ability to walk3 ‘He walked four, my mother never forgot, she says it was a miracle of God.’ 44
Difficulties with activities of daily living4A lot of times I have to put myself in certain positions to do things, like opening a jar—I have to squeeze it in between my arms instead of gripping it with my hand.’ 45
Hearing impairment5 ‘I told the parents that he will never be able to see, to hear and I will get more data to show them how bad things are.’ 46
Issues of development and motor skills5 ‘We both looked at my child, research, experience and what I could expect.’ 47
Language disorders8 ‘I also had a hard time learning to talk.’ 48
Social difficulties2 Social communication is difficult because of his hearing and speech problems, and he is described as having a few friends and no experience in dating. 49
Visual impairment7 At the time of the interviews, the only major sequel was in one child with seriously impaired vision. 43
Other outcomes only in 1 paperAbility to feed themselves: ability to undertake sport: need for physical therapy: normal hearing: retinopathy of prematurity
Gastrointestinal24Breast feeding7 ‘I fully breastfed for 4 months—100%—and I am so proud of it.’ 47
Choice of milk for feeding2 ‘It’s like they [scn providers] didn’t inform us when they were trying to feed my daughter [formula].’ 50
Feeding difficulties5 ‘We kept on saying to the staff on neonatal unit that it was only Gray’s feeding that was stopping him from going home, everything else wasfine.51
Feeding practices2 Mothers had difficulty understanding these instructions and seemed hesitant to liberalise their infant’s intake after discharge. 52
Initiating enteral feeds2 ‘MEF [minimal enteral feeds] should be initiated in first 2–3 days of life as long as the baby is stable.’53
Oral feeding3 ‘[The] very first time [feeding the baby] was just great, to tell you thetruth.’54
Other outcomes only in 1 paperChoking during feeding: eating disorder: fistulas: frequency of defecation: liver failure: necrotising enterocolitis: nutritional intake: other gastrointestinal malformations: regurgitation: short gut syndrome
Respiratory12Frequent respiratory illnesses2 ‘There were lots of masks and nebulisers during thoseyears.43
Mechanical ventilation5 Over 30% of all infant descriptions were about babies who had tracheostomies and were unable to be weaned off a ventilator. 55
Oxygen dependence5My babies did not fit into the criteria for going home early due to one of the twins still being dependent on oxygen.’ 51
Other outcomes only in 1 paperAsthma: breathlessness: chronic lung disease: excessive secretions: nasal congestion: pneumothorax
Neurological11Brain damage (not further specified)2Brain injury is laden with a lot more emotions and moral concerns for sure.’ 56
Neurological symptoms2 ‘Can’t feel some—my left—this is numb right here.’ 57
Seizures2I explained this to the doctor. And he was the one that said it could possibly be seizures. So we’re going to take him in and have him tested.’ 58
Significant IVH2 ‘Although she has a grade IV bleed, the resident says that she moves and looks around, and he thinks the odds are quite good.’ 46
Sleep disorders4 Subsequent to an account of the son’s disturbed sleep at night for several months after discharge, which was an enormous challenge to the couple.43
Other outcomes only in 1 paperNeurological care
Surgical5Appearance of scars2 “I do not like the scar on my belly […]; I was at the beach and everyone kept staring at me like ‘That is a big scar’!” 48
Need for multiple operations2 The mother also worried that there would be more surgeries.41
Other outcomes only in 1 paperCare for surgical babies: need for ileostomy
Infection5Sepsis3 Decrease bloodstream infections selected as key performance indicator 59
Other outcomes only in 1 paperPrevention of infection: susceptibility to infection
Skin4Appearance of scars2 In addition, hospitalisation and different interventions in their first days of life have left marks on their bodies. 48
Other outcomes only in 1 paperBurns: extravasation injuries: pressure sores: skin care
Cardiovascular1Other outcomes only in 1 paperHypotension: presence of patent ductus arteriosus
Genitourinary1Other outcomes only in 1 paperUrological disorders
  • IVH, intraventricular haemorrhage.