Questions never asked. Positive family outcomes of extremely premature childbirth

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Abstract

Objective

To explore positive aspects of family life after extremely premature childbirth, thereby supplementing current literature on long-term family outcome.

Design

Semi-structured, qualitative research interviews were analysed according to the editing strategy described by Miller and Crabtree.

Setting

Denmark, Europe.

Participants

Nine fathers and 11 mothers of 14 children born before 28 completed weeks of gestation at a tertiary centre were interviewed when their children were 7–10 years old.

Results

Whereas developmental delay, functional limitations, family burden, and parental distress are commonly used outcome measures, experiences of another nature were reported in the lives of survivors and their parents in our study. Thus, in spite of periods of deep distress and fear, periods of concern and anxiety and for some parents a workload far beyond average, parents' descriptions of their children's trajectories were also characterised by a perception of improvement and progress. Likewise, all parents reported much love and joy from child rearing.

Conclusions

The value of these results may lie in the perspective they add to the interpretation of current research, the inspiration they may lend to future research on family outcome, as well as the balance they may offer in the information provided to parents of premature children.

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