Best practice guidelines for communicating to parents the diagnosis of disability

I Novak; C Morgan; L McNamara; A Te Velde

doi:10.1016/j.earlhumdev.2019.104841

Best practice guidelines for communicating to parents the diagnosis of disability

Early Hum Dev. 2019 Dec:139:104841. doi: 10.1016/j.earlhumdev.2019.104841. Epub 2019 Oct 10.

Authors

I Novak¹, C Morgan², L McNamara³, A Te Velde⁴

Affiliations

¹ Cerebral Palsy Alliance, Child and Adolescent Health, The University of Sydney, PO, Box 6427, Frenchs Forest NSW, 2086, Australia. Electronic address: inovak@cerebralpalsy.org.au.
² Cerebral Palsy Alliance, Child and Adolescent Health, The University of Sydney, PO, Box 6427, Frenchs Forest NSW, 2086, Australia. Electronic address: cmorgan@cerebralpalsy.org.au.
³ Queensland Health, Child Development Service, PO Box 1055, Cairns 4870, Australia. Electronic address: lynda.mcnamara@health.qld.gov.au.
⁴ Cerebral Palsy Alliance, PO Box 6427, Frenchs Forest, NSW 2086, Australia. Electronic address: atevelde@cerebralpalsy.org.au.

PMID: 31607402
DOI: 10.1016/j.earlhumdev.2019.104841

Abstract

Conveying a diagnosis of a disability to the parents of young children is difficult both for the parent and the clinician, however there is an ethical and medical imperative to do so. However, the process and manner of disclosure needs to be done well. When communication between parent and clinicians fails, parental mental health can be adversely affected. This paper adapts and explains how to use the SPIKES protocol to deliver "bad news" about a developmental disability diagnosis with families of infants <12-months old, using cerebral palsy as an example. Next, the range of responses parents experience to the delivery of bad news from "watchful waiting" to "acceptance" are outlined and explained. The knowledge needs of parents range from causes and prognosis to treatments and outcomes. Using clinical scenarios of recently diagnosed infants, commonly asked questions and suggested answers are tabled.

Keywords: Acceptance; Cerebral palsy; Communication; Diagnosis; Disability; Parents.

MeSH terms

Attitude to Health
Cerebral Palsy
Child
Disability Evaluation
Disabled Children*
Humans
Parents / psychology*
Physician-Patient Relations
Practice Guidelines as Topic*