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Convention of hope–communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities
Author(s) -
Harnett Alison,
Tierney Edel,
Guerin Suzanne
Publication year - 2009
Publication title -
british journal of learning disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.633
H-Index - 39
eISSN - 1468-3156
pISSN - 1354-4187
DOI - 10.1111/j.1468-3156.2009.00580.x
Subject(s) - nice , psychology , best practice , convention , value (mathematics) , convention on the rights of persons with disabilities , good practice , best interests , convergence (economics) , legal guardian , social psychology , developmental psychology , political science , law , machine learning , economic growth , computer science , economics , engineering ethics , programming language , engineering
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.Summary As 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: 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.