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Information and support

Best Practice Recommendations

To meet the information and support needs of parents at the time of diagnosis, the Guidelines recommend that:

3.1  Parents are kept up to date at all times, with honest information. This includes acknowledging any uncertainty that exists about the diagnosis, and explaining any suspected diagnoses that are being investigated. There should never be a large gap between what parents know about the diagnosis and what professionals know or suspect. Building trust with parents is a priority, particularly since the initial diagnosis may be the beginning of a long term parent-professional relationship.

3.2  At the end of the initial consultation, parents are offered factual accurate, up to date, relevant written material on the diagnosis, support groups, entitlements and benefits, and on the Early Services that will be available for their child.

3.3  Information on support groups for specific syndromes is particularly important to parents and is therefore provided when at all possible. Where support groups do not exist in Ireland, contact with UK groups is investigated and facilitated.

3.4 The amount of information provided is tailored to the individual parent’s needs - avoiding information overload for parents who may feel overwhelmed, and meeting the information needs of parents who seek further details.

3.5 Care is taken in the timing of the delivery of news so that the consultation takes place at the appropriate time; taking into account for instance in a neonatal diagnosis that the mother may be recovering from the birth or surgery.

3.6  A contact number for a member of the staff team is provided to the family at the initial diagnosis, which they can use if they have questions or concerns

3.7 A follow up appointment is always scheduled before the consultation is over so that the family leave with a plan, knowing when they will next have contact with those who provided the diagnosis, and giving them an opportunity to prepare questions and raise concerns. This appointment takes place no longer than two weeks after the diagnosis is given.

3.8 Parents are given a written summary of the consultation and receive copies of all correspondence between professionals relating to their child’s diagnosis.

3.9 Next steps are carefully outlined and explained to the family – including any tests that will be carried out and any referral on to other agencies, etc.

3.10 Parent’s preferences are sought and facilitated, including how much information they wish to receive, whether they would like to have visitors or support in limiting visitors while they come to terms with the news, whether they would like input from pastoral care teams, etc.  Meeting this recommendation will include listening to parents during the consultation to assess whether they are overwhelmed by information already received or are seeking further information as mentioned above.

3.11 The family are provided with guidance on appropriate Internet sites which contain relevant and accurate information for their child’s particular disability. This can avoid unnecessary anxiety when parents read information that may not be relevant to their child’s particular case, and was noted by professionals to be of assistance in facilitating parents’ understanding of their child’s diagnosis.

3.12 The option of counselling is made available to families following the diagnosis, after an appropriate period of time has passed.

3.13  The option of meeting the parents of other children with disabilities or similar diagnoses is offered following the diagnosis, after an appropriate period of time has passed.

Click here to go to the next section of the Guidelines; Culture and Language

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  • Informing Families Project, National Federation of Voluntary Bodies,  Oranmore Business Park,  Oranmore, Galway
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