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Informing Families Guidelines launched in Finland

(12 Feb 2015)

International interest in the National Best Practice Guidelines for Informing Families of their Child's Disability, originally developed in Ireland, has been growing over recent times, and the use of the Guidelines has been under consideration in the Finnish health service over the past number of years.

We are delighted to announce that the Guidelines have now been translated into Finnish and were launched at Helsinki Children's Hospital on Thursday 12 February 2015. 

Front cover of Finnish Informing Families Guidelines

The Finnish version of the Guidelines is available on www.jaatinen.info/ensitieto and here on www.informingfamilies.ie.

The Best Practice Guidelines for Informing Families of their Child's Disability were originally developed in Ireland through a comprehensive process of consultation and research with families of children with disabilities and with professionals who support them. Through a collaborative process of partnership between agencies in Ireland and Finland, training was provided by the Informing Families Project Co-ordinator, Alison Harnett and Chair of the Cork Implementation Project, parent Katherine O'Leary in Helsinki and Tampere in 2012, to share the information gathered through the Irish experience.

Download the Finnish translation of the Best Practice Guidelines for Informing Families of their Child's Disability

Informing Families network in Finland

Following on from the initial training sessions in Finland an “Informing Families Network” (Ensitietoverkosto verkosto) was established in Finland. The members of this network include the Finnish Ombudsman for Children, health care professionals from a specific ‘informing families’ workgroup in Helsinki University Hospital, representatives from various disability organisations, and individuals supportive of the introduction of best practice in the area of communicating the diagnosis of a child’s disability to families.

The aim of the network has been to work towards the introduction of the recommendations of the Best Practice Guidelines for informing Families of their Child’s Disability in Finland. From the training provided it was clear to the partners that co-operation across all stakeholders is a vitally important in this matter, and this led to the setting up of the network.  Dr. Miina Weckroth, Executive Manager of “The Association for Jaatinen, the Finnish Activity Centre for Disabled Children and their Families” and herself a mother of a child with a disability, is the contact person for the network which has initiated this work in Finland.

Dr Weckroth explained the reasons that these guidelines are important to implement in Finland; 

“We believe that the Irish Guidelines are very useful to us in Finland. The Guidelines are evidence based, and a comprehensive consultation and research programme was undertaken. The feedback so far from hospitals implementing the Guidelines has been positive, and as such we can see that they can already be used in Finland.”

Dr. Weckroth went on to say:

“The translation is very helpful as the national guidelines are being processed in Finland, which we hope, will take place soon. The Guidelines call for respect for the child and the family, they take into account the many aspects that are relevant to the communication practice and give clear policies to guide practice with practical advice. The Guidelines highlight important points (such as providing positive, realistic messages and hope) and these are areas that require more attention.”

The photos below depict the attendees at the launch of the Finnish translation of the Best Practice Guidelines for Informing Famiiles of their Child’s Disability’ at Helsinki Children’s Hospital on 12 February 2015.

From left Kaija Mikkola, MD, Neonatologist, HUS (The Hospital District of Helsinki and Uusimaa) ; Tuomas Kurttila, Ombudsman for Children; Päivi Juvala; mother representing 'Helsingin Kehitysvammatuki 57 ry' (an NGO for people with intellectual and developmental disabilities and their families); Sanna Kekki, mother and representative from Service Foundation for People with an Intellectual Disability; Dr. Miina Weckroth, MD, PhD, Executive Manager, The Association for Jaatinen, the Finnish Activity Centre for Disabled Children and Their Families;  Jorma Komulainen, MD, PhD,  Editor in chief, The Finnish Medical Society Duodecim Current Care Guidelines. 

(Photo by Jarmo Nummenpää, HUS, Finland).

 

Attendees at the launch of the Informing Families Guidelines in Finnish, at Helsinki Children's Hospital  (Photo by Anu Lönnqvist, The Association for Jaatinen, the Finnish Activity Centre for Disabled Children and Their Families)

 

 



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  • Informing Families Project, National Federation of Voluntary Bodies,  Oranmore Business Park,  Oranmore, Galway
  • Phone: +353 (091) 792316
  • Fax: +353 (091) 792317
  • Email: info@informingfamilies.ie
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