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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report “Giving the diagnosis of disability in a child to parents is a difficult and complex task that few relish. Done well it can reduce parental dissatisfaction and anguish; it can establish positive and important parentprofessional relationships at a crucial time.” 21 (Cunningham et al, 2002, p.500)

Informing Families Consultation and Research Report CHAPTER 2 LITERATURE REVIEW AND NATIONAL POLICY CONTEXT 2.1 Introduction The following literature review provides a broad overview of the national and international research regarding the disclosure of the diagnosis of a child’s disability to parents. It concentrates on areas such as the communication of the news of disability; parental satisfaction with disclosure; aspects of best practice identified through existing guidelines; evaluation of best practice; and parents’ and professionals’ experience of the disclosure process. The review was guided by searches conducted through resources including Cinahl, PubMed and ProQuest,and through research material recommended by the Informing Families Steering Committee. Much of the literature available for this review has been found to be based on opinion and theory rather than empirical data, a finding that is echoed in previous authors’ literature searches (Doran, 1999; Doyle, 2004; Girgis & Sanson-Fisher, 1998). This is an area in which there is a relatively low level of empirical evaluation of recommended practice (Baird, McConachie & Scrutton, 2000). Irish Research The literature search did not yield a significant amount of recent Irish research into how families are informed of their child’s disability. There are a number of studies of a general nature regarding the provision of early services (e.g. South Western Area Health Board & Rush, 2003;Western Health Board & Brothers of Charity Galway, 2003); studies which investigated themes related to the disclosure process (e.g. The Needs of Carers of Fragile Babies and Young Children with Severe Developmental Disability, Redmond, 2000) and various relevant descriptive, discussion or theoretical pieces (Kealy, 2004; Mulrooney & Holland, 2004). However there has been just one significant recent Irish study which specifically explored the disclosure of disability to parents.This study; Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care (Doyle, 2004), was conducted by the then Eastern Regional Health Authority (ERHA) and examined practice within the maternity hospitals and early intervention services in the former ERHA region. This study has not been replicated to date in other areas of the country. Government strategy and policy documents have specifically and frequently referred to practice for how parents are informed of their child’s disability and have made recommendations for the introduction of measures to improve outcomes for families. This chapter concludes with a review of these strategy and policy documents. 2.2 Importance of the Disclosure Process You will never forget the words. For as long as you live, through the sad times and the happy times, those words will always come back to you. Those first words the doctor spoke to you, telling you that there was a problem with your child. The way you accept and the way you begin to deal with the situation starts with those first words you hear. (Krystyna Swirydczuk in Davis, 1993, p.34) The manner in which parents are informed that their child has a disability impacts upon the way the news is received and accepted (Price, McNeilly & Surgenor, 2006), and can have an important bearing on the attitude of parents throughout their child’s life (Review Group on Mental Handicap Services, 1990). Parents may learn of their child’s disability at the maternity hospital, or the news may come as an evolving diagnosis based on assessments following suspected developmental delay (Doyle, 2004). Regardless of the setting it is vital that those delivering the news do so in a sensitive manner, giving the facts truthfully and positively, providing support, accurate information, and showing respect for the child and the family (Cunningham, 1994; Doyle, 2004; Right from the Start, 2003; Sloper and Turner, 1993). The literature indicates that it is essential that staff members responsible for disclosing the news are supported in this sensitive task, through training, support and clear guidelines (Right from the Start, 2003). Theoretical Context The Informing Families Project and Guidelines are rooted in the context of the Social Model of disability, which relies on one simple notion; disability is not about an individual condition, rather it is about how society supports a diverse humanity to have equal access to all that society has to offer. (Oliver, 1990; Union of the Physically Impaired Against Segregation, 1976). The social model creates the movement from the individual being the problem to society being the problem. Oliver (1990) describes the problem as being located in society and the cause of the problem as being the systematic lack of inclusive provisions within society. Tom Shakespeare (2006) describes the most recent position on the social model debate as moving towards recognising a more complex interactional relationship between impairment and disability, and supports adopting a broader international frame of inclusive rights – while at the same time acknowledging the crucial importance of the social model position in it’s time (Shakespeare, 2006). 22

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