Table 3

Holistic outcomes

Holistic outcome domainsNumber of studies discussing outcome domain
OutcomeNumber of studies discussing outcome
Verbatim text extract
Normality22Ability to lead a normal life2 ‘The mother also worried that Lisa would not have a normal life.’ 41
Normality16A 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 paperBeing treated normally: inability to create a normal life: normal health: thriving
Suffering15Comfort4 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
Suffering9 ‘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 paperEx-patients’ separation from their suffering: symptom control
Survival14Survival11 ‘It hurts. I didn’t know, I didn’t know if they were going to make it or not.58
Survival with disability3It 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 disability4 ‘And afterwards you are worried about how they are going to survive. If they would have impairments, and so on.’ 43
Growth8Growth8 ‘She was born so early, it’s nice to see that she’s finally catching up with how she’s growing.42
Pain7Pain4It like hurts when you wake up in the morning.57
Pain management2 Research priorities identified: identifying effective interventions to prevent or reduce pain or stress 63
Other outcomes only in 1 paperChronic pain
Other outcomesOverall health state2We 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
Vitality2 ‘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 appearance7 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 paperPhysiological stability