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.