Convention of hope–communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities

Abstract

Accessible summary• This study is about the way that parents are told that their child has disabilities. The researchers talked to families and professionals to find out if parents are given nice and hopeful messages about their child. • The study found that parents and professionals agreed that there should be positive, realistic messages and hope given to parents about their child. • Many parents said that they did not get nice or hopeful messages. The study found that professionals could give realistic and hopeful messages by telling parents that there is help available The study also found that professional could tell parents about the value and importance of every child. • Giving realistic, positive and hopeful messages to parents about their child is the start of providing good support to people with disabilities through their whole lives. Providing good support throughout people's whole lives is one of the aims of the UN Convention on the Rights of Persons with Disabilities. SummaryAs part of a larger study to develop best practice recommendations for informing families of their child's disabilities, this study researched the elements of best practice required when communicating this news to families. It traced the convergence between these practice recommendations and the UN Convention on the Rights of Persons with Disabilities; in particular with regard to the provision of positive, realistic and hopeful communication. The study employed a mixed methodology, involving 22 focus groups and a questionnaire survey of 1588 professionals and 584 families. The study found that a large majority of parents and professionals supported the recommendation of providing families with positive, realistic and hopeful messages at the time of diagnosis but less than half of the parents surveyed reported receiving communication of this type. The findings indicated that some professionals may struggle with fears of providing 'false hope', a fear of litigation and a lack of training, when considering providing hope. However the research also identified positive and hopeful messages that are not in conflict with providing honest and realistic communication. These include:ª The Official Journal of the British Institute of Learning Disabilities acknowledging the dignity and worth of the child as an individual, indicating that there is help available for parents, and informing families about the spectrum of possible outcomes for their child rather than the worst case scenario. The provision of appropriate positive, realistic messages and hope is fully aligned with the principles of the UN Convention.

“I received a leaflet and that is all”: Father experiences of a diagnosis of autism

“…First, the degree of understandable anger expressed by men is particularly noteworthy in the light of Towers' () contention that the relationship between fathers and professionals is moulded around key events, one of which is diagnosis so that an overly negative experience at this critical moment may exert a considerable impact on the future pattern of father relationships with professionals. Second, an undue focus on deficits and future negative outcomes reported here and in other studies concerning a diagnosis of childhood disability (see Hedov, Wikblad & Annerén, and Harnett et al., ) is problematic for several reasons. Most significantly, as indicated above, information conveyed at diagnosis can affect perceptions concerning the family's ability to cope, with Taanila et al.…”

“…Furthermore, Crane et al. () reported that one‐third of parents expressed dissatisfaction with diagnostic delivery, while Harnett, Tierney, and Guerin () found that four in ten parents of children with disabilities did not believe that the news had been delivered with “hope and positive messages” (p.261). Such a situation is concerning since the manner in which a diagnosis of childhood disability is communicated may have significant implications for parents’ ability to cope in future.…”

Divergent Views of Hope Influencing Communications Between Parents and Hospital Providers

“…When HCPs anchor the notion of hope to the child’s outcome alone (i.e., potential for death or impairment) then parents might perceive that the child is seen as a medical condition and not valued as a human being (Harnett, Tierney, & Guerin, 2009). Parents in this study often perceived HCP biases in the counseling or subsequent interactions.…”

Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

“…Members of a clinical MDT, therefore, are among the many professionals who are tasked with the delivery of a child's developmental diagnosis-and all will acknowledge the difficulties inherent in such a disheartening action. The news of a child's disability may be unforeseen, or it may be the outcome of a number of planned assessments or tests (Harnett, Tierney, & Guerin, 2009). This information may come to light during the prenatal development period, at birth, or during the emergent periods at various stages of the child's development (Harnett, Tierney, & Guerin, 2009).…”