Familial perspectives on end of life conversations on the special care baby unit

Jones, Kerry (2012). Familial perspectives on end of life conversations on the special care baby unit. In: Minerva Pediatrica, The Maruzzio Foundation, Turin, 64(6 (Sup 1)) p. 22.

URL: http://www.togetherforshortlives.org.uk/assets/000...


Background. The admission of an infant to the neonatal intensive care unit represents for many parents, an unexpected and challenging event, particularly following birth. Neo natal nurses are often involved with patient’s families during difficult times when death is anticipated due to the clinical condition of the baby and withdrawal of artificial ventilation at the end of life. For many parents communication and the support that nurses and clinicians provide, can mediate parental responses to their infant’s death. There is an opportunity to forge a relationship of trust necessary to provide optimal care for patients and parents. A vital aspect of this care is the recognition of the significance of the death of the infant.

Aims. This research raises important issues around the lived experiences of parents on the neo natal unit, particularly at the end of an infant’s life.

Methods. This is a qualitative collective case study sample of 30 parents who were recruited from the southwest and north of England. Parents were at least 18 years of age, English speaking and had experienced the death of their baby more than 12 months prior. A voice centred relational method was employed to analyse data from 30 semi structured interviews and six focus group discussions with parents as framed by Brown and Gilligan (1993) at Harvard University.

Results. Parents identified several domains which were deemed to be highly salient and influential to the care received prior to and around the time of the death of the infant. These included relationship building, demonstration of effort and competence, information exchange and level of parental involvement. Conclusions. This research suggests that the care received by parents during the hospitalisation of their child and around the time of their death can have a profound impact upon their experience of care.

Funding. This research was funded by the University of Bristol, UK.

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