From a child perspective towards the child’s perspective

The overall aim of the thesis was to explore everyday functioning in six year-old children born preterm, from the children’s perspectives and from their parents’ perspectives. The relation between everyday functioning and neonatal risk factors, behavioural characteristics was studied with descriptive and correlational statistics, ANOVA and multiple linear regression (I). Patterns of everyday functioning were explored in a cluster analysis following a person-oriented approach (II). In a mixed method approach, the children’s and their parents’ perceptions on children’s competence in everyday activities were explored with a pictorial instrument and analysed with descriptive statistics and qualitative content analysis (III). The children’s perceptions of meaningful everyday life situations were explored in a photo voice study, analysed with qualitative content analysis. In total, 144 children born preterm and 222 children born at term and their parents were involved. The results indicated that from the parents’ perspective most children born preterm and full-term were perceived with strong everyday functioning featuring strong motor, process and communication skills, a positive interaction pattern and low levels of behaviour problems. As a group, the children born very preterm were perceived weaker in their everyday functioning than the full-term group but the pattern of performance skills, interaction and behaviour varied similar to that of children born full-term. Further, it was found that preterm birth was not the main predictor, instead hyperactivity had most influence on everyday functioning. Moreover, the children born preterm perceived themselves to be overall strong performers of everyday activities. They wanted to be active and do things and for that they wanted to have skills and significant others i.e. siblings, parents, friends and pets to interact with and to feel safe and loved. Further, the children born preterm expressed a will to develop, improve and gain new skills and to have more opportunities to do meaningful things. In conclusion, the results in this thesis indicate that young children born preterm are able to reflect on their everyday functioning, and express needs and desires for their participation in meaningful everyday life situations. Moreover, preterm birth is not the sole predictor of everyday functioning more critical is the interaction of individual, behavioural and contextual factors. ISBN 978-91-7485-345-2 ISSN 1651-4238 ...så länge det finns ungar så finns det hopp! (Ur Turistens klagan, text och musik C.Vreeswijk. © Wooden Horse Music)