Stoic survival: the journey of parenting a premature infant in the bush.

Introduction: The birth of a premature infant is a stressful and emotionally challenging time for parents. Families living in rural areas often have reduced access to the specialist services premature infants require, and different concerns from their metropolitan counterparts. Rural families may have to spend extended periods of time at a metropolitan centre while their child is in a neonatal intensive care unit (NICU). Regular return trips to hospital may be required for follow up. Parental experience of this unexpected event and the resultant intensive health service involvement requires further examination; most studies focus on the NICU experience. This exploratory study was undertaken from the rural paediatric allied health perspective. Because there are few accounts of rural families' experiences in the literature, this hermeneutic phenomenological qualitative study focused on the rural parent's experience of having a premature infant in a rural area during the first 12 months of the child's life.

Method: Participants were selectively recruited from the case lists of paediatricians in a rural/regional hospital. Seven parents (5 mothers and 2 fathers) of premature infants consented to participate in semi-structured interviews. Interviews were of 60-90 min duration per parent, and were audiotaped and transcribed verbatim. The transcripts were analysed thematically using a phenomenological approach. Process and reflection diaries were maintained in order to provide an audit trail.

Results: The participant group reflected a range of experiences. Parents described being initially shocked and then gradually adjusting to being the parent of a premature child. Three major themes emerged: (1) 'Coping through optimism' when parents consistently spoke positively about even stressful and difficult aspects of their experience; (2) 'Stoic survival' where parents did not emotionally deal with their experience, often citing others' needs as having higher priority; and (3) 'Striving for normal' when parents focussed on the aspects of their child's medical care or development that was closer to that of a full term child. Parents described feeling devastated if they felt their infant regressed or was progressing too slowly, and elated whenever a new milestone was achieved.

Conclusion: Gaining insight into the experience of parents of premature infants can help health professionals ensure services more effectively meet the needs of these families. Rural families were pleased with their local services although they indicated that travelling to a metropolitan centre was extremely burdensome. While the families interviewed had access to some local specialist services, they expressed concern that if they resided in a more remote area there would be reduced access to services and greater personal strain. Further research is required to determine the experiences of Indigenous families, separated or divorced parents and families living in remote areas.