EXTERNAL RESEARCH PAPERS

Research from other organisations

With the current changes to paediatric care in Ireland and the development of the New Children’s Hospital and its satellite centres, it has never been more important for organisations with a common goal and who represent the interests of children and young people, along with their families, to connect and share best practice. Below you will find recent research papers from health care organisations working on behalf of families facing illness.

TOO DEAR TO VISIT

Academic Paper from Cliona’s Foundation

The report sets out three key recommendations:

  • Requirement to establish a national database on families caring
    for children with a life-limiting condition.
  • Government to establish a new ‘looking after a child with life limiting illness’
    grant for families with a child suffering from a life-limiting condition.
  • Cliona’s Foundation to tailor its support services to meet the unique needs of
    the families including partnerships with services companies to provide a range
    of assistance to the families.
    Download report. 

PARK THE CHARGES

Park the Charges: A campaign from the Irish Cancer Society

  • Patients undergoing cancer treatment should receive free or significantly reduced car
    parking;
  • Patients should be informed of parking exemptions in their first appointment letter;
  • Concessions should be widely promoted and easy to understand and apply for;
  • Responsibility for informing cancer patients about their rights should rest with a specific
    member of staff;
  • Healthcare professionals should be made aware of free parking schemes/concessions;
  • Any future tender arrangements for private car park operators should clearly place the
    onus on operators to provide discs or tokens for cancer patients;
  • Charges should be displayed clearly and well publicised at car park entrances and wherever
    payment is made, along with on the hospitals website;
  • Any concessions should also be clearly advertised;
  • Transparency in parking charges should be encouraged. Hospitals must publish car parking
    costs, revenue raised from car parks, the use of that revenue and tenders/contracts with car
    park operators publicly;
  • Weekly caps on charges should be introduced to protect regular patients and visitors

Download the report here

LIVING WITH A RARE DISEASE IN IRELAND

Research Report – Living with a rare disease in Ireland during the Covid-19 pandemic.

The report, Living with a Rare Disease in Ireland during the COVID-19 Pandemic, has highlighted how COVID-19 is hindering access to routine treatment and care for people with rare diseases, and is having a detrimental effect on their health and well-being. The research provides a snapshot into life today for people with rare diseases, with responses from 176 people living with a rare condition, their family members and their carers, from across the island of Ireland. It was undertaken by Rare Diseases Ireland, the national alliance for rare disease voluntary groups, in the two-week period leading up to May 6.

Download report here

Children in Hospital Ireland is at the forefront in:

  • Promoting the welfare of sick children by drawing attention to their special needs for emotional security
  • Advocating on behalf of all sick children
  • Supporting and helping parents before, during and after their child’s stay in hospital
  • Highlighting the additional needs of sick children to policy and decision makers
  • Organising hospital play schemes with the help of a group of dedicated volunteers

By browsing through our website, you will learn about all aspects of our work and the services we provide. If you would like more detailed or specific information about any aspect of our work and services, please contact our dedicated team.

Children in Hospital Ireland is a registered charity (Charity No. 6632) and is a company limited by guarantee, (Children in Hospital Ireland) registered in Dublin, Ireland. (Company Registration No. 297192)

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