IPB Prematurity Report 2014

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Prematurity in Ireland by Irish Premature Babies 2014.pdf

OVERVIEW

The national report on prematurity “Preterm birth: An insight into the social, economic and psychological encumbrance on families in Ireland 2014” is part one of a longitudinal study into the long term effects of prematurity on both the baby and the family of the preterm baby. There will be three stages in this report, beginning when the neonate is born up right up to eighteen years of age until they reach adulthood. This report will give a unique perspective into both the short and long term experiences of parents. The report will also highlight the epidemiology associated with preterm birth.

OBJECTIVE OF THIS REPORT

The principal aim of this report is to give a voice to the families of preterm babies born in Ireland each year. This report looks at the experience of 600 families throughout the country and details their unique and distinctive experience of having a preterm baby in Ireland.

In doing so the report aims to:

· Highlight some of the key reasons for preterm birth in Ireland.

· Highlight the problems faced by parents while their baby is admitted into one of Ireland’s Neonatal Intensive Care Units or Special Care Baby Units.

· Voice the experience of bereaved parents and present how neonatal death is dealt with in hospitals.

 · Report on the outcomes of prematurity on the baby and highlight some of the long term issues faced by preterm babies.

· Report on the effects of having a preterm baby on the family unit.

· Highlight the problems and difficulties faced by parents in seeking follow up care in the community.

• Help to stimulate a wider interest in research in the area of prematurity.

• Promote a general understanding of prematurity from a parent’s perspective.

• Highlight the importance of adequate funding and training for the Neonatal Intensive Care Units and Special Care Baby Units.

FORMAT OF THIS REPORT

Part one provides a brief symposia and understanding of the terminology and statistics associated with preterm birth from an Irish perspective.

Part two looks at the questions asked in the survey and provides the results of the answers given by parents.

Part three
offers three case studies from parents who were involved in this survey. It delivers a human element to a statistical report.

Part four offers a conclusion and recommendations by the charity.

DATA COLLECTION

In 2011 the charity set up a section on their website www.irishprematurebabies.com called “Register your Prem”. At the date of publication of this report, over 600 parents have filled in the section.  We have been acquiring the results for just over three years.

Survey participants were asked to fill in a total of 47 questions. The survey is divided into three main sections:

Section A focuses’ on parent information and experience while the baby is in the NICU/SCBU

Section B which deals with patient information of the baby while in the unit.

Section C patient follow up after discharge.

In order to protect the anonymity of both the parents and the baby, personal details have been omitted from this report. We have also omitted naming specific hospitals in the report as it would not benefit either the hospital or current/future admissions.

OVERVIEW

The national report on prematurity “Preterm birth: An insight into the social, economic and psychological encumbrance on families in Ireland 2014” is part one of a longitudinal study into the long term effects of prematurity on both the baby and the family of the preterm baby. There will be three stages in this report, beginning when the neonate is born up right up to eighteen years of age until they reach adulthood. This report will give a unique perspective into both the short and long term experiences of parents. The report will also highlight the epidemiology associated with preterm birth.

OBJECTIVE OF THIS REPORT

The principal aim of this report is to give a voice to the families of preterm babies born in Ireland each year. This report looks at the experience of 600 families throughout the country and details their unique and distinctive experience of having a preterm baby in Ireland.

In doing so the report aims to:

· Highlight some of the key reasons for preterm birth in Ireland.

· Highlight the problems faced by parents while their baby is admitted into one of Ireland’s Neonatal Intensive Care Units or Special Care Baby Units.

· Voice the experience of bereaved parents and present how neonatal death is dealt with in hospitals.

· Report on the outcomes of prematurity on the baby and highlight some of the long term issues faced by preterm babies.

· Report on the effects of having a preterm baby on the family unit.

· Highlight the problems and difficulties faced by parents in seeking follow up care in the community.

• Help to stimulate a wider interest in research in the area of prematurity.

• Promote a general understanding of prematurity from a parent’s perspective.

• Highlight the importance of adequate funding and training for the Neonatal Intensive Care Units and Special Care Baby Units.

FORMAT OF THIS REPORT

Part one provides a brief symposia and understanding of the terminology and statistics associated with preterm birth from an Irish perspective.

Part two looks at the questions asked in the survey and provides the results of the answers given by parents.

Part three offers three case studies from parents who were involved in this survey. It delivers a human element to a statistical report.

Part four offers a conclusion and recommendations by the charity.

DATA COLLECTION

In 2011 the charity set up a section on their website www.irishprematurebabies.com called “Register your Prem”. At the date of publication of this report, over 600 parents have filled in the section.  We have been acquiring the results for just over three years.

Survey participants were asked to fill in a total of 47 questions. The survey is divided into three main sections:

Section A focuses’ on parent information and experience while the baby is in the NICU/SCBU

Section B which deals with patient information of the baby while in the unit.

Section C patient follow up after discharge.

In order to protect the anonymity of both the parents and the baby, personal details have been omitted from this report. We have also omitted naming specific hospitals in the report as it would not benefit either the hospital or current/future admissions.

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