Holistic outcomes
| Holistic outcome domains | Number of studies discussing outcome domain (n=62) | Outcome | Number of studies discussing outcome (n=62) | Verbatim text extract |
| Normality | 22 | Ability to lead a normal life | 2 | ‘The mother also worried that… Lisa would not have a normal life.’ 41 |
| Normality | 16 | “A major focus for parents was seeking information that told them that what was happening was ‘normal’ and that everything was going to be ‘fine’.”60 | ||
| Other outcomes only in 1 paper | Being treated normally: inability to create a normal life: normal health: thriving | |||
| Suffering | 15 | Comfort | 4 | ‘You can almost feel what it’s like in the incubator, lying on the lambskin, that it’s how I would want to have laid and… Well, it looks very comfortable.’61 |
| Suffering | 9 | ‘This infant’s short life was never comfortable…I frequently felt we were torturing the child just doing daily care.’ 55 | ||
| Other outcomes only in 1 paper | Ex-patients’ separation from their suffering: symptom control | |||
| Survival | 14 | Survival | 11 | ‘It hurts. I didn’t know, I didn’t know if they were going to make it or not.’58 |
| Survival with disability | 3 | ‘It isn’t up to us to say what is quality of life, because parents might think that even if the child was disabled, that it was better than not having a child at all.’62 | ||
| Survival without disability | 4 | ‘And afterwards you are worried about how they are going to survive. If they would have impairments, and so on.’ 43 | ||
| Growth | 8 | Growth | 8 | ‘She was born so early, it’s nice to see that she’s finally catching up with how she’s growing.’42 |
| Pain | 7 | Pain | 4 | ‘It like hurts when you wake up in the morning.’57 |
| Pain management | 2 | Research priorities identified: identifying effective interventions to prevent or reduce pain or stress 63 | ||
| Other outcomes only in 1 paper | Chronic pain | |||
| Other outcomes | Overall health state | 2 | ‘We try to think of the whole life consequence. We talk about, you know, strength and cognitive capacity, but also life and communication and feeding yourself and getting around.’ 56 | |
| Vitality | 2 | ‘The doctor said that, whatever we do, however good we are, it is mostly up to the infant himself. No matter how small they are, they can have something within themselves.’64 | ||
| Physical appearance | 7 | Both mothers and fathers found their infant’s appearance and behaviour to be the stressors with the most impact. 65 | ||
| Other outcomes only in 1 paper | Physiological stability | |||