Att vara förälder till ett för tidigt fött barn : en prospektiv studie om upplevelsen av föräldraskap och möten med vården

Sammanfattning: The present doctoral thesis focuses mainly on the experiences of 20 women and men of becoming and being parents of a prematurely born child and on their perceptions of their contacts with health and medical care services. An additional aim was to investigate the utilisation of health care during the first year of life and its relation to high-risk diagnoses in the neonatal period.Data were obtained by interviews of the 20 sets of parents to infants born at a gestational age of <34 weeks with no serious congenital defects. These parents were interviewed 1-2 weeks after the infant’s birth and at 2, 6 and 18 months of age. The interview texts were subjected to phenomenological and content analysis. Data was also obtained from the records of 36 infants born at a gestational age of <31 weeks and with a birth weight of <1500 g and 36 full-term infants. The records included information regarding contact with health care services including the child health centres (CHCs) and the outpatient clinics of the paediatric and ophthalmic clinics. Finally data from the other two quantitative studies were obtained from three questionnaires: Quality of Care from The Patient’s Perspective, The Swedish Parenthood Stress Questionnaire and The Toddler Behaviour Questionnaire.The result of the studies showed that the utilisation of health care by the very low birth weight infants was higher than that by the fullterm infants in paediatric and ophthalmic outpatient clinics. High-risk diagnoses in the neonatal period did not correlate with utilisation of care except for visits to the paediatric outpatient clinic, especially planned visits.The internalisation of parenthood was described by the parents as a time-dependent process, with four syntheses of experiences – alienation, responsibility, confidence and familiarity.The development and construction of the mothers’ and fathers’ parental identity followed a pattern that could be summarised into three themes: Unexpected start of parenthood, integration of parenthood into the sense of identity and recognition of parental identity. Important turning points in experiences of parenthood often occurred when the infant could be removed from the incubator, when it was discharged from the ward, and when the infant appeared normal compared to full-term infants.The quality of care was judged, from the parents’ and nurses’ perspective. In general the subjective importance of the given care was rated higher than the care actual given in both neonatal care and care at the CHCs. Higher ratings were given to neonatal care compared with the care at CHSs for medico-technical competence. It was also of importance, of both parents, to receive an optimal identity-oriented approach and socio-cultural atmosphere in the neonatal care and the care at the CHSs. High-risk diagnoses in the newborn did not affect the answers.Parental stress of very preterm children, at 18 months of age, did not differ notably from those parents of children born somewhat less premature, but they assessed their children as being rather later in the development of social behaviours. Parents of children who had had a difficult neonatal period were not more stressed when the child was 18 months old than those who had no problems in the neonatal period.In sum, this research project showed that the parents’ expectations and experiences of becoming mothers and fathers in preterm birth was a process of integrating the unexpected start of parenthood into the parents’ sense of identity and their way of being. When the parents developed a relationship with the infant, actively participated in its care on the basis of their own preferences, and received recognition as parents, this process was strengthened. It is therefore important that the professional caring of the staff should meet and involve the natural caring of the parents.