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National research of the Informing Families Project

Evidence base for the National Best Practice Guidelines:

The National Best Practice Guidelines for Informing Families of their Child’s Disability were developed through a comprehensive consultation and research process.

The scope of the research included:

  • Physical, sensory, intellectual disability and autistic spectrum disorders
  • Ante-natal, at birth and evolving diagnoses
  • Hospital, community and disability services
  • Professionals in 27 involved nursing, medical and allied health discipline

The methodology used to develop the guidelines consisted of 3 stages:

Stage 1
National and international policy and literature review

Stage 2
22 focus groups

  •  7 with parents of children with disabilities
  • 15 with professionals in the key disciplines involved in communicating with and supporting families at the time of their child’s diagnosis

Stage 3
National questionnaire survey

  •  584 families (31.5% response rate)
  • 1588 professionals in 27 disciplines (response rate varied per discipline)

Each stage built on the previous one, and from these three phases came the Consultation and Research Report, Best Practice Guidelines and DVDWords You Never Forget’  Click here to find all of these resources

 

Importance of the disclosure process

For families the manner in which they are informed of their child’s disability or additional needs , [2]is of key importance:[1]

  • it has an impact on levels of distress and anxiety
  • it has a bearing on the attachment process
  • and can profoundly influence the evolving parent-professional relationship.  

                                                                                                        (Cunningham, 1994)

For professionals, disclosing a diagnosis of disability:

-        can be an emotional and challenging experience

-        requiring training and support 

-        and requiring clear policies to guide practice on the front line                                  

(Western Area Health Board & Brothers of Charity, 2003; Right from the Start, 2003;

Doyle, 2004)

 

Previous research indicates that it is vital that those informing families of their child’s disability do so in a sensitive manner, giving the facts truthfully and positively, providing support, accurate information and showing respect for the child and family (Cunningham, 1994; Right from the Start, 2003; Sloper and Turner 2003). Poor disclosure can lead to an increased risk of litigation when communication is badly handled (Fallowfield & Jenkins, 2004; Harnett et al, 2009).

 

Results of the Irish research

In 2007, the national survey of the Informing Families Project (Harnett et al, 2007) found that there was a gap between the satisfaction levels of parents and professionals in relation to disclosure. While just 34.6% of affected families in Ireland were either ‘Satisfied’ or ‘Very Satisfied’ with the way they had been informed of their child’s disability, 62.2% of professionals indicated that they were ‘Satisfied’ or ‘Very Satisfied’ with their disclosure practice. These findings indicate that there is a significant gap between how parents and professionals perceived the quality of the disclosure and underlines the need to address the issues leading to parental dissatisfaction.

 

Prior to the publication of the Informing Families Guidelines, the national survey of professionals found that 79.8% of those involved in the disclosure process were unaware of any recommendations or training in best practice to guide them in this task. There is reason for optimism however; the report found that the levels of satisfaction in the Irish study were in line with international findings and that many parents were given the news in an appropriate manner. However, there were also some significant deficits in disclosure practice highlighted, which means that the current challenge is to maintain existing good practice and bring about more consistent implementation of good practice where there are difficulties. The deficits identified were in the following key areas: insensitive or inappropriate communication; unsuitable environments for communication that lacked privacy; inconsistent provision of comprehensive, accurate and up-to-date information and a lack of continuity of care. Professionals spoke of their need for training and clear evidence-based guidance and many reported struggling with inadequate or inappropriate physical environments with little privacy available for communicating with families. (Harnett et al, 2007)

 

The research also showed that where there are deficits in practice this can impact on families and professionals considerably, thereby reinforcing the need to build on good practice already in place and to provide a template for making practice improvements where necessary on the ground.



[1] The term ‘Family’ is used to describe any unit of parent(s), guardian(s) and/or sibling(s) who are the primary care-givers of child with a disability and is not restricted to a particular definition of the family unit.

 

[2] The terms ‘disability’ and ‘disabilities’ are used frequently throughout the report for readability but it is recognised that it may be more appropriate to simply use the name of a particular syndrome that a child is diagnosed with rather than referring to a ‘disability’, and that for some children concerns about delays in development may later become resolved. In all cases what is important is the recognition and acknowledgement of every child as an individual, with an emphasis on the strengths and abilities of the child and an explanation of the needs and disability as secondary to the individuality of the child.  Over the course of the research and implementation it has also  become clear that the best practice guidelines are relevant for those who inform families and those who support families of children with disabilities.

 

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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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