World Prematurity Day will be celebrated today across 60 countries worldwide. Irish Premature Babies (IPB), Ireland’s only registered national charity to support families with a pre-term baby are today launching details of the national Prematurity in Ireland Report. The report recommends that the state provide more services to support families with a pre-term baby and the allocation of increased resources for neonatal units.
The report, titled ‘Prematurity in Ireland: An insight into the social, economic and psychological encumbrance on families in Ireland 2014’, is a longitudinal study into the long term effects of prematurity on both the baby and the family of the preterm baby. This research has never before been carried out in Ireland.
The 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. Since 2011, IPB have been gathering responses from the participating families and this will continue until the babies reach adulthood.
The report focuses on the financial burden on families, the effects on the family unity and the psychological strain caused by having a sick preterm baby.
The key findings from the initial phase one of the research shows:
· Over 40% of mothers of pre-term babies said they suffered from post natal depression or post-traumatic stress disorder
· Only 22% of mothers said they had access to food and hot water while in the neonatal unit
· 38% of parents reported lack of communication between medical staff and mothers of preterm infants
· 60% of families did not know if they have any rights or entitlements
· 33% of women indicated they had received no support while in the maternity unit from lactation services, social workers or counsellors
· 60% of pre-term mothers said community support was non-existent
· 80% of parents classified access to support therapies in the community as very poor
· Only 2% of parents were in a position to pay for private therapy. The rest had to wait on the public list, in many cases the wait was up to two years.
Commenting on the report, Allison Molloy, Chairperson of IPB said:
“The hospital staff dealing with the premature babies are quite simply amazing. However, there is no doubt that they are overstretched and their focus, as it should be, is on ensuring the babies get the best care. Unfortunately, due to a lack of resources, this means the parents often lose out and they too require huge support."
“Through the relentless help of our volunteers, we have been able to provide support and advice to Irish parents in what is an extremely difficult time in their lives. Demand for our services has increased by a massive 300% in the last 12 months. We would urge the state to provide adequate funding and training for neonatal units and in the community to assist families with a pre-term baby. This is crucial.”
IPB is the only organisation providing a wide range of services for parents in Ireland, it is entirely voluntary run and ethically funded. The charity provides a wide range of services for families and particularly for those struggling financially.
IPB provide home support grants for families who have preterm quads, bereavement counselling, emergency assistance with accommodation travel and care packages for families while their babies are in the neonatal intensive care units.
IPB also run workshops on first aid, breastfeeding / expressing, art therapy and sensory issues. Last year IPB introduced a new programme of refurbishing parents’ rooms in hospital, they did three rooms in Crumlin hospital and are in Cork University hospital this year.
The key recommendations from the report are:
· Parental accommodation for families should be provided in Dublin. Parents need to be with their babies and are currently forced to pay for private accommodation or not visit their baby as often as they would like to.
· Better early intervention and screening for preterm babies to determine possible health implications as a result of being born preterm.
· Amendments of the maternity acts of 1994 and 2004 to take into consideration mothers who deliver early and spend the duration of their maternity leave in hospital.
· Exemption of tax on donated medical equipment. IPB has donated €200,000 to the units around Ireland but a significant proportion of that money goes on paying VAT.
· More resources and staff for the neonatal units around Ireland.
· Investment in education in community professional care workers
· Extension of tax reliefs/credits to help with financial burden of prematurity on families.
For further information on Irish Premature Babies, please visit
www.irishprematurebabies.com.
