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Tiny Life

TinyLife is Northern Ireland’s only Premature and Sick Baby Charity, dedicated to reducing premature birth, illness, disability and death in babies. Every year in Northern Ireland approximately 1,800 babies are born too soon and up to 2,000 babies per year will spend time in a neonatal unit.  TinyLife actively supports families who have a premature or sick baby (babies) in the neonatal units and within the community and within the home environment.  Anecdotal evidence shows that we may be the only voluntary organisation that provides a range of structured supports tailored to individual family’s needs anywhere in Europe or indeed the world.  

Key Facts about Premature Babies

  • Children born about 3 months prematurely are 3-4 times more likely to struggle in school than children born full term.
  • 40 -50% of children born prematurely will have some sort of a learning disability
  • Children born extremely prematurely, weighing 2 lbs (907 grams) or less at birth experience significant learning disabilities that persist into their teenage years.
  • 80% of children born prematurely are failing at Key Stage 1.
  • More than 90% of premature babies who weigh 800 grams or more survive.
  • Those children that are born premature have higher levels of anxiety, depression and aggression and lower self-concept than full term children. The lower the birth weight, the less emotionally adjusted the child will be.

In 2012 we commissioned an Impact Evaluation Report on our Family Support Services to determine the Social Return on Investment figure.  The purpose of the 2012 study was to promote and support the use of the SROI model and the information generated by the report has been used as a mechanism to record the social value generated by the Family Support Service.  The report included an evaluative social return on investment analysis, looking back historically at real data over the year April 2011 to March 2012 and two years forecast 2012-13 and 2013-14. This paper takes information from the report and also gives an update on new and current developments since 2012.

Since their inception TinyLife has established themselves as a dynamic and highly effective organisation which has made, and continues to make, a valuable contribution to families across Northern Ireland. By supporting medical research in the areas of stillbirth, miscarriage and premature birth, TinyLife seek to improve outcomes for parents and babies in Northern Ireland and beyond. The organisation works closely with healthcare professionals, researchers, parents and local health trusts to keep up to date with the changing needs of families of premature babies and to identify how best to address these support needs.  Research with parents has shown the importance of providing ongoing support from the neonatal ward at home following the babies discharge (The Poppy Project, NCT August 2009).  It is well documented by the Neonatal Network NI Report on the Care Pathway that parents struggle when babies are discharged and often return to seek medical help from their GP or local Accident and Emergency within a short timeframe post discharge.   To combat this and to provide on-going support to families TinyLife have developed and currently deliver a number of services, namely:

  • Hospital Support Service
  • Parent Support Groups
  • Breast Pump Loan Service
  • Home Based Volunteer Support Service
  • Baby Massage
  • Baby Sensory
  • Tinygym
  • TinyStart
  • Education & Information Resource for Families & Professionals
  • Maternal and Child Health Research

Strategically all services offered by TinyLife are aligned with current Government policies and strategies here in NI including • Safeguarding • Early Intervention • Prevention • Infant Mental Health • Disability and • Breast Feeding.

Tinygym and TinyStart are two of the new projects developed by TinyLife in the last 2 years which focus on child development with excellent results.

Tinygym is a collaboration between medical staff in the NHSCT and TinyLife.  The Paediatric Physiotherapist in the Trust wanted to test a community based program working with parents to see if outcomes improved for premature babies as many extremely premature babies who are born under 32 weeks or 1500g will require months of physiotherapy.  This service provides a community based physiotherapy program for parents to then carry out at home.  Research shows that whilst the motor skills curve initially increases it begins to drop short after the program finishes.  Findings from the pilot demonstrate that not only does the curve not decrease after the program but continues to rise.

The TinyStart program is a collaboration between LifeStart Queens and TinyLife to provide a home based education program to improve the long term outcomes for babies born under 32 weeks or 1500g.   It is based on the randomised control trial of the Growing Child Program and initial findings are very good.

The SROI report drew upon data held by TinyLife and new data collected and collated directly from parents, volunteers and health professionals. The information was collected by means of questionnaires. The research established that the Family Support Service volunteers contributed significantly to the wellbeing of families with multiple births, preterm and sick babies.

The findings from an independently commissioned report to evaluate family support services showed the impact that TinyLife services have on local families:

Health Professionals

  • 100% stated that it made ‘a lot’ of difference to the lives of mothers making them healthier and more confident
  • Over half said it improved the mothers mental health
  • 80% stated that babies were healthier and required less doctors appointments therefore less medical treatments.

Volunteers

  • 88% reported that babies were more settled
  • 88% felt that the family unit was functioning better

Parents

  • 95% felt more supported by having a volunteer
  • 75% felt that they had more time to spend with family especially other children
  • 64% felt less stressed
  • 58% felt more confident

Finally the key outputs during the reporting period April 2011 to March 2012  were used to determine the SROI at that point in time and concluded that  the total social return on investment ratio for the Family Support Service is 1:24.70 meaning that for every £1 invested returns £24.70.