Disclosure of developmental disability: A study of paediatricians’ practices

Abstract

The low 'disclosure practice index' scores in this study are not necessarily an indication that practices are poor, as there are challenges to the validity of the advocated practices. There were few significant associations found between the practices of paediatricians in disclosure and their experience, training, contact with children with disabilities and attitude to people with disabilities.

Parental experiences and preferences which influence subsequent use of post‐discharge health services for children born very preterm

“…Regardless of these parental issues, supply of limited resources and redefined state responsibility within the area of disability is a concern identified by government 15,18 . Issues regarding access to support services are hampered by limited supply and the burden of families identified as being in crisis 6,19 . Health carers need to take these considerations into account when advising services and information ensuring current availability and effectiveness of their advice.…”

Developmental delay: an ambiguous term in need of change

“…Whether the diagnosis is immediate or evolving, parents require factual, honest and compassionately delivered information to make sense of their situation 7–9. Yet, research has found that when a diagnosis is evolving, medical professionals may withhold information and concerns from parents based on their subjective opinion about whether the parent is able to cope with the information 10. The term ‘developmental delay’ facilitates this process because it alludes to a temporary concern.…”

Physicians’ Self-Perceived Competence on Breaking Bad News to Parents of Children with Neurodisabilities

“…Only two studies have explored physician experiences with BBN within the context of childhood neurodisabilities, each including interviews with around 25 pediatricians [23,24]. Both studies highlighted the shortcomings and challenges in pediatricians' disclosure practices related to diagnoses in children with neurodisabilities.…”

“…Both studies highlighted the shortcomings and challenges in pediatricians' disclosure practices related to diagnoses in children with neurodisabilities. While experience and attitudes played a role, there were also significant influences from factors such as parents' emotional state [23], time constraints [24], and the need for improved training and policies [24] to enhance disclosure practices. The anxiety-provoking nature of BBN discussions can evoke emotional responses in physicians [12].…”