Table 2.

Organ system outcomes

Organ system outcome domains	Number of studies discussing outcome domain (n=62)	Outcome	Number of studies discussing outcome (n=62)	Verbatim text extract
Developmental	32	Ability to walk	3	‘He walked four, my mother never forgot, she says it was a miracle of God.’ 44
		Difficulties with activities of daily living	4	‘A 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 impairment	5	‘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 skills	5	‘We both looked at my child, research, experience and what I could expect.’ 47
		Language disorders	8	‘I also had a hard time learning to talk.’ 48
		Social difficulties	2	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 impairment	7	At the time of the interviews, the only major sequel was in one child with seriously impaired vision. 43
		Other outcomes only in 1 paper		Ability to feed themselves: ability to undertake sport: need for physical therapy: normal hearing: retinopathy of prematurity
Gastrointestinal	24	Breast feeding	7	‘I fully breastfed for 4 months—100%—and I am so proud of it.’ 47
		Choice of milk for feeding	2	‘It’s like they [scn providers] didn’t inform us when they were trying to feed my daughter [formula].’ 50
		Feeding difficulties	5	‘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 practices	2	Mothers had difficulty understanding these instructions and seemed hesitant to liberalise their infant’s intake after discharge. 52
		Initiating enteral feeds	2	‘MEF [minimal enteral feeds] should be initiated in first 2–3 days of life as long as the baby is stable.’53
		Oral feeding	3	‘[The] very first time [feeding the baby] was just great, to tell you thetruth.’54
		Other outcomes only in 1 paper		Choking during feeding: eating disorder: fistulas: frequency of defecation: liver failure: necrotising enterocolitis: nutritional intake: other gastrointestinal malformations: regurgitation: short gut syndrome
Respiratory	12	Frequent respiratory illnesses	2	‘There were lots of masks and nebulisers during thoseyears.’43
		Mechanical ventilation	5	Over 30% of all infant descriptions were about babies who had tracheostomies and were unable to be weaned off a ventilator. 55
		Oxygen dependence	5	‘My 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 paper		Asthma: breathlessness: chronic lung disease: excessive secretions: nasal congestion: pneumothorax
Neurological	11	Brain damage (not further specified)	2	‘Brain injury is laden with a lot more emotions and moral concerns for sure.’ 56
		Neurological symptoms	2	‘Can’t feel some—my left—this is numb right here.’ 57
		Seizures	2	‘I 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 IVH	2	‘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 disorders	4	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 paper		Neurological care
Surgical	5	Appearance of scars	2	“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 operations	2	The mother also worried that there would be more surgeries.41
		Other outcomes only in 1 paper		Care for surgical babies: need for ileostomy
Infection	5	Sepsis	3	Decrease bloodstream infections selected as key performance indicator 59
		Other outcomes only in 1 paper		Prevention of infection: susceptibility to infection
Skin	4	Appearance of scars	2	In addition, hospitalisation and different interventions in their first days of life have left marks on their bodies. 48
		Other outcomes only in 1 paper		Burns: extravasation injuries: pressure sores: skin care
Cardiovascular	1	Other outcomes only in 1 paper		Hypotension: presence of patent ductus arteriosus
Genitourinary	1	Other outcomes only in 1 paper		Urological disorders

IVH, intraventricular haemorrhage.